Sunday, July 31, 2011

A visit to the outside world.

Hi again everyone, Sunday dawns bright and clear, had a really good night last night, slept through from 11.45 until 4.40 am, then dozed off again until 6.30 am and again until 8.15, Stomach muscles a lot easier today so thank goodness for that as yesterday it was agony, still that,s the way it goes.

A new carer arrived today, he seemed a pleasant chap, he was called in short notice as the regular weekend carer had phoned in sick.

Had Porridge for breakfast, tried it without pureeing it first, it went down OK not as easy as usual but better than it had been before so that was good, gives you the feeling that the medication is starting to take effect in some small way, so decided that I would try scrambled egg (2)  for lunch, again that went quite well, as although it was just scrambled using a fork, I added extra butter, just to make it that little bit easier to swallow, had to mash it down a bit with a fork, but again, jubilant that I managed to eat it at all so yes progress was achieved today in a small way.

Gervase came round about 2.30 and took me in the wheelchair over to B&Q (A visit to the outside world), it is amazing how just a small trip outside the confines of the house can work wonders for moral, anyway, saw Lee the Electrician over there ( We are good mates and I worked at B&Q with him for 6 years),  he is still the same laid back lee as he ever was, Not many of the old crowd there now, many have left, and many don't work week ends, also saw Bet (Had a Snog) she is still the same cheerful bet although like me in a wheelchair as she has M.E, Not much changed at B&Q still the same old cheap imports for sale at inflated prices, and lack of staff, and apart from a couple they are reluctant to assist the customer and there DIY knowledge is almost non-existent. (Nothing much changed there then).

Should have gone to Homebase

I enjoyed the trip over to B&Q, it made a nice change and got me out of the house and away from the TV for an hour. Gervase also went and got a bit of shopping for me and left about 4.40 pm to make his way back home. 

Time to get dinner now i think, eating has been good today but won't push my luck so will puree the meal tonight, one of my favourites is the Asda Bangers and Mash, from there "Great Stuff Range" because you get 4 small Sausages instead of 2 large it is easier to puree, I cook it as per the instructions and then just Puree the Sausages down, you also get the Potato,swede and carrot mash with it so just adding extra gravy is all that is needed and it goes down a treat and is very tasty. ( just right for us with Dysphagia)

Well thats about it for the day, dinner cooked and eaten, it is now 6.15pm, so time for a wash and then settle down for an evening of TV and facebook, before the meds at 9.00, so all in all a really good day today, a few twinges but lots of positives and fresh air as well, so until tomorrow Cheerio peoples.

Saturday, July 30, 2011

Paying the price today

Well folks, after that really good day yesterday and having a lovely bath, I am certainly paying the price today, with this disease yo tend to forget at times ( well I do anyway) just how weak the muscles in the body get, before my diagnosis in April this year I lost about 5.5 stone, most of that was muscle from the hips,legs and shoulders.  it was bad enough yesterday getting into the bath, but when it came to getting out it was nigh on impossible, Although the mobility was in the legs, there was no muscle strength to get into a standing position and in all the pulling and straining I think I have strained the muscles around my stomach area, as I have terrible muscle aches there today, with a little pain but not much, so rest today is the order of the day I am afraid, so a very short posting today,

Perhaps I should have hired a crane, But which one ?

Slept better last night, ( probably wore myself out with all the effort of getting out of the bath), so at least one positive came out of it.

will be back again tomorrow, so until then Tatty By

Friday, July 29, 2011

July Overview.

Hello again all, well thats the month of July coming to a close, where does the time go, does anyone know ( or care) however this month has been a bit up and down really, although to be honest the positive aspects have outweighed the negatives so I am pleased about that.

It has been 12 weeks since I was first diagnosed with Dermatomyositis, and 10 weeks since returning home from hospital, and it has been a steep learning curve as far as I am concerned. (and still is)


The swallowing problem, although making some improvement is still making eating very difficult and so I am still on a Puree Diet, I try different foods to puree down so that I can get various tastes and flavour,s, but it is still quite a boring regime, still looking on the bright side it can only get better with time ( and medication) looking at the illustrations to the right, which would you chose ?
( see what I mean)

Twisted Stomach :

With the twisted stomach (cup and spill ) the biggest problem is/was the amount of acid reflux that was  being produced, at one time we were controlling this with large doses of Omoprazole and diperidom, but as the swalowing got harder we had to use a less effective drug "Lamprazole" which was disolved in the mouth.

Just recently though the Acid reflux seems to be diminishing so hopefully the medication for the Dermatomyositis is having an effect of controlling the acid reflux (Or not as the case may be) anyway it is certainly a lot better the last week or two.

Is this Acid Reflux, or just some "old Geyser"  Answers on a postcard please and sent to  "Dorothy" at  "I could not give a toss", Land of Ozz.

Dermatomyositis :

How are we doing with this so far, well to be quite honest have not had a lot of pain but have limited mobility and no muscle strength, ie walking any distance, lifting shopping bags, reaching above shoulder etc, but saying that, it is a lot better than 3 months ago, have been reducing steroids, now on 30 mg a day, but also increasing the Methotrexate now up to 15 mg on a friday with Folic Acid on a monday, hopefully we will see a continuing improvement as the weeks go by, and soon, once we can stabilize the medication we can start some Physio to build the Muscle strength, "always live in hope"
""Got to get ready for the 2012 Olympics ""

So there we have it folks small progress but progress none the less but a long road ahead so all we can do is carry on and do the best we can and enjoy the good days and ignore the bad.

Pauline phoned this morning, She is coming to collect me about 1.00 pm and take me down to her place so that gordon can help me to have a bath, it is easier at Pauline and Gordon,s as it is a ground floor flat (No Stairs) . We can also drop off repeat prescription at Doctors so that I can collect it on Tuesday when I go for blood test.

Well that was a laugh and a half, having a bath is a marathon event for me at the moment, first of all I cant lift my leg high enough to get into the bath (Never used to have trouble getting my leg over), eventually make it into the bath  (with help from Gordon) , and then afterwards cant get out of the bath, trying to stand up was like a comedy of errors. had the mobility in the legs but no muscle strength, it was hillarious, eventually made it but god that tired me out, (To much Laughing), good job Gordon cut my hair before I had a bath,.

So there we have it folks Friday comes and goes, been a brilliant day, had a nice bath, haircut and Manicure, had a few laugh,s along the way, and am now absolutely Knackered , but well worth is so I am off for a rest, so until tomorrow,  Cheerio people.                                                                                                

Thursday, July 28, 2011

Visitor Invasion.

Hello again, here we are Thursday already and so far it has been a good day after a really sleepless night, no explanation really, just could not sleep, went to bed about 11.30 pm  and was ok until I woke up about 2.30 am, dozed back off until about 4.30 am and then that was it, just could not get back to sleep, no idea why and have no explanation for it.

Decided to get out of bed about 7.00 am and got some breakfast !!! Hooray managed to have a dish of Cocoa pops !!!!!! No Puree food at breakfast for me today , now is that an Improvement or not ?, took the medication and got ready for the carer, she came early today at 8.30 so now washed, Shaved, Groomed and ready for the day ahead.

Had a phone call from Pauline to say she will be round about 11.30 just going in the chemist for me so she is on the way here, also had a phone call from my sisters friend to say Eileen and She would be coming into day about lunchtime so lots of visitors to look forward to today, which will be nice. anyway true to her word Pauline arrives about 11.40 am.

We decided to have a clear out of some of the junk I have amassed over the years, and hidden away in the cupboards in the upstair bedrooms, God the stuff we found, why did I ever keep it we binned several bags of stuff.

Well Had a nice chat with Pauline, and the my sister Eileen and her friend Chris turn up, nice to see them, and they have brought their lunch with them.

So back into the Kitchen and make some more tea and coffee, my god I am being over worked and bullied today by the female population, !! Only Joking !! its nice to have some company, and also to catch up with what is happening with the rest of the family, so a nice afternoon, Eileen and Chris make their way home about 2.00 pm and Pauline goes about 2.30 pm, and  I see they have left all the washing up for me to do, still never mind it was worth it. So now a bit of a sit down and a rest , as my Son Gervase will be in on his way home from work this evening.

So all in all a brilliant day, no muscle aches, but feeling tired, have decided to cut down on the coffee intake and try Green tea, hopefully that may let me sleep better at night, well you never know, Need to get a decent sleep tonight as tomorrow is Methotrexate day and we increase to 15 mg tomorrow, also going for a haircut as well so a busy friday coming up.

So will leave you all to it and have a good day.

Wednesday, July 27, 2011

It Has To Be Said !!!

Hi everyone, Wednesday again and to be truthful it has been a good day so far,  no visitors today(apart from the carer), so a quiet day today. Phoned Portsmouth City Council to let them know about changes to my Pension Credit and Attendance Allowance, as it could affect my Council tax benefit so apart from that not done a lot apart watch a bit of TV and do a bit of pottering around the house.

Had a good night last night, slept pretty well but the shoulder has been a bit painful and sore today, but not as bad as it has been so not to bothered about that at the moment, did a nice puree Chicken Curry for lunch today, still have trouble getting the rice at the right consistency, added a little cream to it today that helped so that is probably the way to go next time.  for tea today it will be salmon and Cheesy mash potato, with a white sauce.

!!! Well It Has To Be Said !!!

It has to be said.
I cant hide it no more.
To puree my food.
Is becoming a bore.

What wouldn't I give.
For a Burger and Chips.
To have something solid.
To pass through my lips.

It isn,t the fact.
That it has got no taste.
That the texture is smooth.
Like pate or paste.

It's the after effect.
That don't cheer me up.
Its that horrible thought.
Of the words "Washing Up".

Now where it all comes from.
Nobody knows.
But the Washing up starts.
And it grows and it grows.

With blenders and dishes,mugs,cups and plate,s.
Jugs, whisk,s and spoons.
And the odd garden gate.

Well must make a start.
Get the washing up done.
I don,t want to do it.
It isn't much fun.

But one things for sure.
As i stand at the sink.
I will have to do it all again tomorrow """ Bummer"""

Well thats today over and done with, all in all a good positive day, until tomorrow, Bye.

Tuesday, July 26, 2011

Manic Tuesday

here we are then Tuesday has arrived (again) must say I was not sorry to see the clock get to 7.00 am this morning, Had a terrible night last night, didn't have my main meal until late yesterday and kept waking up through the night with Heartburn, Acid Reflux, Sore Shoulder, among other things so all in all thank goodness the morning has arrived, the one positive is that the weather is not so warm and sunny today so breathing is easier.

Have an early start today as I am at the Health Centre at 08.10 am for weekly blood test and to have my toe dressed, although that seems to be healing nicely. Pauline picked me up at 8.00 am so off we go.

The Nurse had problems getting the blood to flow out of my veins today ( I don,t think her parents were vampires) it is funny as some people have terrible trouble getting blood out of me, others have no problems at all, any way she looked at my toe and said that it was probably ok so she would not re-dress it but if I had any problems to phone in and I would be seen, so that is that over for another week.

Pauline took me back home, by now it was (9.00 am), so pauline went off home and will come back about 11.00 am to take me shopping, as I have the carer coming at 9.15 a

It is now 11.00 and pauline has arrived to take me shopping , so wheelchair into the car and off we go to Asda in Fratton.

Asda Fratton, Portsmouth.

So we arrive at asda and off we go into asda, me in the wheel chair and pauline pushing, now tell me this. Why are shoppers with trolleys so rude and uncaring about people in wheelchairs ? I had the same in 1993 when my wife was in a wheel chair, other people were so uncaring and rude it was unbelievable.

Trying to push a wheelchair around a store is never easy, and when you have a shopping trolly clipped to the front is is nigh impossible to control properly, but people don,t seem to understand the problems disabled people encounter trying to do everyday chores, unfortunately I have not got a lot of patience when it comes to dealing with idiots, ( must learn to be more tolerant)

Is this Me ?

Well we eventually got the shopping done, so that is good, got home about 1.30 pm, had a coffee with pauline, unpacked shopping, it was then time for medication. had main meal earlier today, so that is better and should mean I will have a better night tonight, pureed a piece of fish and had that in a white sauce with some mashed potato, so all ready now for an afternoon nap.

So until tomorrow folk go carefully.

Monday, July 25, 2011

Funday Monday

Hello again and here we are another Monday, Weather over here in the UK is very Sunny with a temperature of 23 c and a humidity of 36%. woke about 6.15 this morning, with a sore and painful shoulder, but that subsided after about 40 mins so probably laid awkward on it last night, anyway time to get Meds done this morning and Breakfast before the carer comes as I need to Phone the Surgery to see a doctor about my breathing difficulties and the possible re-occurrence of Oral thrush, ( As opposed to a Song Thrush)
Song Thrush 

Anyway let us not detour  away from the visit to the doctors. Phoned the doctor about 9.30 and got an appointment for 11.20, so not to bad , just time to get changed and order a taxi. anyway lets cut to the chase . I go in to see the Doctor , he check,s my chest and no problems there, so it is down to the muscles on the lungs making breathing difficult, anyway he decides that he will try me with an inhaler to see if that may help. so he gives me a prescription for a Ventolin Evohaler (100mg Salbutamol sulphate) and a Aerochamber Plus.
Aerochamber plus

However I then proceeded to ask about the possibility that the oral thrush was re-appearing again , true to form he said, " That,s probably a side effects of the steroids, so don't worry about it, as they reduce the steroid's, the thrush will go .

♫♬ Don't Blame it on the Sunshine ♬♫
♫♬ Don't Blame it on the Moonlight ♬♫
♫♬ Don't Blame it on the Good times ♬♫
♫♬ Blame it on the Steroids ♬♫

Didn't have the heart to tell him the thrush first started before I was on the Steroids
bless his little cotton sock,s. I think this disease has really confused him, good job my consultant is on the job.

So there we are, job done, Pauline and Gordon picked me up from the surgery, and went and got the inhaler, and ""joy oh joy"" it works, fingers crossed, but I took a couple of puffs about 12.30 pm and am breathing easier than I have done for several weeks and it is now 3.15pm. The other positives that came out of the doctors today was that my blood test results from friday shows that my white blood cell count is starting to come back down (it was high), and other results of blood are satisfactory.

Well that is the excitement for the day over and done with, now to rest for the rest of the day and let the muscle inflammation, settle back down ( After being out in the sun). Tomorrow will be an early start as I have Blood test at the Health centre at 08.10 am, so will need to get up early to get ready, thank goodness pauline is picking me up, and also we will be shopping at asda (Walmart) tomorrow so a busy day ahead. 
see you all again tomorrow so bye for now.

Sunday, July 24, 2011

Not a good day today.

Hi there folks, well after several good days, today is a bit of a let down, Not having a very good day today as I am finding it difficult to swallow today, I think the thrush is coming back into my throat and mouth, had it before and its a pain in the butt. also this afternoon have a bad muscle flare up and the right shoulder muscles are very painful so out with the paracetamol.

Gervase came this morning and did a bit of shopping for me so that was good, we had a nice chat, he left about 2.00 pm to go shopping with leanne.

Thats funny, thought about the paracetamol, and the shoulder muscle stopped hurting and the redness has gone from the elbows and fingers, so that flare did not last long, trouble is I now feel knackered, but that,s the way this disease goes until we get the medication stabilized.

Well I have been busy working on the website "Myositis in Focus" and have designed a Logo for it so here it is. will have to think about designing a logo for this blog.

Oh well folks will keep this short for today as not a lot is happening just have to make sure I get some rest this afternoon/evening and make sure that I don't try and overdo things before the muscles are ready.

Update 18.00 hrs: well looks like the muscle flare was short lived but will contact the GP tomorrow morning for a check up. anyway have designed a logo for the " Living with Dermatomyositis" Blog. 

Saturday, July 23, 2011

The Curse of the Blue Badge

Hi Ho folks, well its saturday again and the start of another weekend, although as far as I am concerned at the moment there is not a lot of difference between weekends and weekdays. Still find it hard to come to terms with having very little mobility although am convinced that once we can get the medication stabilized and working all that will change, but it is early days in the treatment yet and I need to be a lot more patient, as there is a long way to go yet.

The medication is going well and there are very small improvements in some areas so that is good news, and I am keeping busy with this blog, my websites and also with good old facebook: however the major source of entertainment this week is down to Portsmouth City Council !!!!!!!!!!!!!!!!!

The Curse of the Blue Badge
(as opposed to the curse of the weir rabbit)

The Blue Badge Scheme is Parking Concessions for disabled and blind people. and I was advised by my medical people to apply for a blue badge due to the lack of mobility that I have, so a couple of weeks ago I phoned Portsmouth City Council (PCC) and they sent me the forms to fill in, Now this is where I get confused and the fun begins ( I think its my age that does it)
I have been awarded the top rate of Attendance allowance by the Department of works and Pensions (DWP) due to my disablement and that I need help with various things throughout the day and night, and also have been classed as "severely disabled" also by the DWP and awarded extra pension credit, now I have the letters from DWP confirming this, so I decided to contact PCC and see if I automatically qualified for a Blue Badge. the reason for this is, that on the forms they sent for me to fill in it states that 

"if I receive the higher rate of Disability Living Allowance for Mobility then I would automatically qualify for a Blue Badge"

Now this is where I get Confused: 
With this disease, I have  got very limited mobility, my whole body,s muscle system has been attacked and decimated, I can not walk more than a few paces at a time, my hips and shoulder muscles are worse affected, I can not lift my hands above my shoulders, so cannot go shopping on my own, as I cant reach the shelves, I need to be in a wheelchair as I have difficulty walking, and I cant carry heavy shopping bags, on top of all that my muscles in my lungs are weak so have difficulty with breathing if i try and do to much, and the muscles that control the bladder and bowels are also weak ( that brings its own problems).

 Now according to the DWP Disability Living Allowance (DLA) can only be claimed by people under pensionable age, if you are drawing retirement pension you need to claim for Attendance Allowance (AA) which is what I am getting. and you only qualify automatically for a Blue Badge with DLA not AA as they say that when you reach pensionable age you are expected to have mobility problems (What a load of Crap).

However I explained to the lady on the phone that although I did not get DLA because I was drawing my pension I was classed as severely disabled by the DWP and had the letters in writing and that I was awarded Extra pension credit and the Highest rate of Attendance Allowance so I thought that I should be entitled to a Blue Badge Automatically.

 Her answer was: No you need to fill in all the boxes on the form and possibly have a medical examination by a independent doctor ( For christ sake I have a rare disease which affects 3 or 4 people in a million), so keeping calm I explained to her that the only reason I could not get the DLA was because of my age and that I thought that PCC was discriminating against me because of my age, ( Oh dear that did it) the lady got very uppity so I asked to speak to a supervisor. 

However it transpired that the supervisor would not speak to me but said through the other lady that if I sent in photo copies of the paperwork from DWP they would look at it and possibly give me a Blue Badge. ( and so the saga continues)

As far as I am concerned if age is the only thing that stops me getting the DLA and I need that to automatically get the Blue Badge then it is age discrimination, it will be interesting to see what happens now that the government  is increasing the retirement age ?

Oh well there you are folks, another interesting event in the life of frank. 

Friday, July 22, 2011

Silly Friday

Hi all and here I am again, Friday is upon us once more, so its to the medicine cabinet for the Methotrexate.  this is the last week on 12.5 mg, next week we increase to 15.0 mg and so hopefully we will then stay at that dosage and let it stabilize.

It is a funny old day today as I have to go to the Eastney health centre for weekly blood test today and then have the infection on my toe dressed at the same time, also get the appointments for the next few weeks so we will see if they have got it right this time or not. well it looks like the infection on the toe has all but cleared now so will get it looked at next week but the practice nurse seems to think that, it will be ok after next week !!! Hooray !!!!. now the appointments.

No change there then, still a total cock-up, can't really see where the problem is, in getting these appointments correct, perhaps the receptionist was a comedian in a past life, oh well can,t be bothered to argue, will play it by ear and phone in myself on a weekly basis.

Have been busy this week in setting up a new website "Myositis in Focus". Since starting this blog I have been contacted by people that suffer from one of the myositis diseases, saying how they enjoy reading how I am coping with the disease and that they find it hard to get the information on the disease. There is a lot of info around on the web but a lot of it is correct but there is also a lot of mis-information so I am collating the correct info and links into a single site so that it is easier for people to follow.

Was listening to some Tom Jones songs on the radio this afternoon and they were playing Deilah, so being in one of my playful moods I decided to alter a few of the Lyrics so I put these words to the music.

My, My, My-oh-sigh-tis,.
Why ,Why,My-oh-sigh-tis
Remember before
We used to romp on the floor
I'm sorry Delilah
I just can't perform anymore.

Hope this has not offended anyone, its just me being silly, Sorry Tom.

Oh well all in all it has been a good day today, weather has been pretty good and swallowing has not been to bad so fingers crossed small positive progress is being achieved, which is all one can ask for in these early days, keep forgetting it has only been about 12 to 13 weeks since this was diagnosed.

For anyone interested the web address for my new site " Myositis in Focus" is in the links list on the left of this page
Until tomorrow then folks in the words of Ken Dodd "Tatty Bye"

Thursday, July 21, 2011

Like Waterloo station today.

Hi there again folks, well thursday arrives and the weather is still very damp, still according to the weather forecast it should brighten up on Sunday.

Well it started as a busy day today and just got busier, I was awake at 5.45 this morning, got up and made a coffee, took it back to bed and fell asleep until  8.15, so that set me back a little, anyway no worries really got my self dressed and decided to have wheatabix for breakfast today, makes a change from puree porridge, there must be some improvement in the swallowing as the wheatabix are going down easier than than they were a few weeks ago.  anyway, at 9.10 my carer turns up to get me groomed and ready for the day ahead,

Pauline phoned about 10.00 to say she will be round about 11.00 for a couple of hours and true to her word she arrives about 11.15, we have a coffee and a chat and she said that she will have a go at cleaning my kitchen worktops, which is nice as they certainly need a good going over, I try my best but havn't got the strength to really give a good clean. anyway before she can start there is a knock on the front door and it is the district nurse come to dress my toe ( it is being done tomorrow at the eastney health centre after my blood test) so start to explain when blow me down my brother Pat arrives to pay a visit. so it is getting like waterloo station here now so many people and very little room, however not to complain as it is nice to see people, explained the situation to district nurse regarding my toe, so that is ok. and then settled to have a chat with pat, and pauline goes to sort out the kitchen.

It was a very pleasant morning today, pat stayed until about 1.00 pm when he went off to do a couple of jobs and pauline left about 1.30 pm, kitchen looks very tidy now ( wonder how long it will stay like that)

Gervase will be round this evening about 6.30 pm on his way home from work, so will be nice to see him and have a chat, so all in all a busy day, did puree salmon for lunch today with a white sauce and mashed potato, certainly food is getting easier to swallow and the appetite is increasing so positive vibes at the moment.

Tomorrow will be a busy day as I have blood test at 12.30 and also tomrrow is Methotrexate day and I always feel like crap on Fridays so not a good day for me, at least it is only once a week, and It starts to feel better by mid afternoon.

Well another week nearly over and still no contact from social services with regards to a re assesment of my care needs, spoke to the district nurse matron when she came on tuesday, and she said she would contact Social services so I may here from them next week, I hope so as the care plan I am on at the moment was the re-abelment one  for my release from Hospital, it should have lasted for 5 weeks and we are in week 9 now so don,t know how much longer it will be in place for. Oh well "God bless the System".

Its about time I stopped rambling on and started to think about what to have for tea tonight, will it be soup or something more adventurous, Who Knows, only time will tell, so until tomorrow,

Wednesday, July 20, 2011

A day in the life of !!!!!

When all around is chaos.
And I really feel like crap.
I just look into a mirror.
And give myself a slap.

I won,t feel sorry for Myself
There is nothing I can do.
I've got DermatoMyositis
But I have not got the flue !!! YET !!!!

I have not got a clue why I wrote that, Just something different I suppose, anyway Hi people hope you are all ok today,  not a lot happening today, the weather is very damp so the best place is indoors today.

After all the excitement of shopping at Asda yesterday it is time to take it easy today, anyway had a decent nights sleep didn't wake until 4.00 am this morning (first time I have slept for 4 hours without waking for a long time) turned over and went back to sleep until 6.30 am.

Yesterday I bought A fresh chicken joint from Asda so decided I would cook that today, so put that into the slow cooker at 8.00 am this morning,  by 1.00 pm it was cooked with the flesh of the bone so steamed some Brocolli and Cauliflower, made some quick Mashed potato using "Smash" and some frozen "Swede and Carrot Mash ", pureed it all seperately and had that for lunch, with a nice chicken gravy. enjoyed it but the downside is the amount of washing up to do, I now know why I buy ready meals to puree. I keep looking at all the washing up to do so better make a start on that or else it will soon be time to think about getting tea.

One thing I have noticed is that I have more of an appetite now and am eating more, although the Dysphagia has not improved, at least I am finding different thing,s to puree, so am getting a varied diet and a selection of taste,s. I Am looking at compiling, a recipe book for pureed meals for people that need a pureed diet, this was suggested to me by my cousin Maureen in Canada, so giving it serious thought.

Well it,s been a good day today, although quiet, Leanne may be popping in to see me after work today, so if she does it will be nice to see her and have a chat. Right now must go and get that washing up done so will catch up with all you folk tomorrow.

Update 18:40
Leanne  came round about 4.30 pm, so that was nice to see her and have a nice chat. also her mum Elaine came round later so we also had a nice chat, it is so nice to see family as it breaks up the monotony of the day and gives me a respite from day time TV. It is Gervase and Leanne,s 2nd wedding anniversary on Saturday so hopefully they will have a nice day together and spend some time to themselves, leanne and Elaine left about 18:20 , so it was a very pleasant afternoon.

Tuesday, July 19, 2011

Tuesday comes and Tuesday goes.

Hi everyone, well here we are Tuesday the 19th July 2011, as you know from the previous post had to phone the GP today because last week,s blood test result showed a low white blood count, however must have misheard the receptionist as when I spoke to the doctor she said that it was a high blood count on the white blood cells not a low count, however she was not to concerned at this point as we are still in the process of increasing the Methotrexate in stages and then stabalizing. all she said was that if I felt unwell at all to contact the surgery and she also said that when I had a blood test in 1997 I had a high white blood cell count then also ? so it may be that I am one of those people with a high white blood count, anyway we will carry on monitoring with weekly blood tests so it looks like the GP,s have at last got there act together and accepting the fact that they need to take me seriously, as I spent from Oct 2010 until May 2011 trying to convince them something was wrong with me and them not showing a great deal of interest, however they still have very little knowledge of Dermatomyositis. as the doctor said today " You are a bit of a challenge "" Ha Ha Tell me about it.

Right there we go moan over. Been a good day so far today, pauline came about 11.00 am and took me shopping in Asda (The English Walmart ). did a good shop so that helped, still can't understand the attitude of some people when they are confronted with a wheel chair,  it is not the easiest thing in the world to manouver around a store especially when you have a trolley clipped to the front ( Think Pauline needs to take a driving lesson in Wheelchair Pushing), Only Joking

The weather was quite pleasant this morning with some nice sunshine but as I sit here now, black clouds are approaching so looks like it will be wet this evening,

Gervase will be coming in to visit this evening for an hour on his way home from work, so it will be nice to see him and have a chat, and put the world to right,s  (well Campbell and Clegg cant do it right)

It is now 2.45 and the district Nurse has just arrived so will have to go and get my toe infection dressed so will be back tomorrow.

Monday, July 18, 2011

Monday comes and Goes.

Hi all and a good Monday to you all, well here we are again, the start of another week, first things first and that is Monday is Folic acid day so that,s the first thing to do, the rest will then follow. Well it was a better nights sleep last night only woke up 3 times and went straight back to sleep, breathing easier today but I think that is down to the weather at the moment, it is overcast here with rain showers and a temp of 16 c and humidity of 72%.

Well a better day so far today, pauline and gordon turned up about 9.45 on the way to gosport to say they had put the prescription into the chemist and they would deliver Meds this afternoon,

had a nice lunch today cooked a minted lamb cutlet and pureed that down and had it with Puree cauliflower, Brocolli and mashed potato.

Doctors surgery phoned this afternoon to say that last weeks blood test showed that my White blood cells are giving a low reading so need to phone surgery tomorrow am and discuss with doctor, this is probably an effect of the Methotrexate as it is suppressing the immune system, so some adjustment or a change of medication is probably needed here,

Oh Well thats about it for today need to get the washing up done from lunch and then think about tea, but will probably havea short nap in the recliner first.

Have a good day.

Sunday, July 17, 2011

Another Sunday

Morning People, well another Sunday is upon us and like yesterday the weather here in the Uk is changeable to say the least, one minute Rain the next Sunshine. Had a bit of a lie in this morning didn't get up until about 8.15, getting lazy in my old age, the one thing about Sunday is that the Carer does not turn up until about 10.30 - 11.00 so pointless putting on a shirt and jumper until she has been and groomed me, because as you probably know I cannot raise my right hand above shoulder height at the moment so need help washing face and neck and also combing hair, hopefully I will get the mobility back again at some point ( fingers crossed)

A lot of Acid reflux today, on hindsight probably my fault as I pureed a Chicken Korma  curry for tea yesterday evening, have to remember to leave spicy food alone, but did need something tasty to eat, so will have to take it easy for tea tonight, chicken soup perhaps.

Had a good visit from Gervase today, he came round about 1.30 and did a bit of shopping for me and then we spent 20 min,s out in the back garden and he did a bit of weeding for me. ( I did Help, I held the bag to put the weeds in ), had a nice chat and he left about 3.30 so that was nice and broke the day up for me.

The muscles seem to be behaving themselves today, did a few gentle exercises this morning and so far, no muscle flare.

Oh well time to think about watching a couple of old movies on TV and having a bite to eat for tea and settle down for the evening as it is going to be a busy day tomorrow, need to sort out prescriptions with the Doctors/Chemist and also get last week,s blood test results and a grocery shop at asda on Tuesday hopefully and get te Photographs done so that I can get the Disabled Parking badge, so until tomorrow I will say, Cheerio and take care.

Saturday, July 16, 2011

Saturday " A Day of Rest"

Hi there to one and all, only a quick posting today, everything seems to be going along nicely at the moment, yesterday I increased the Methotrexate to 12.5 mg and that seemed to go ok. Didnt sleep well last night, no idea why, just one of those things I suppose, but woke this morning with a neck muscle hurting again something I will have to get used to as the muscles start to repair themselves. so all in all things are going very much the way that they should do.

Will be watching Time Team repeats on TV today as well working on the New Horizons web site so will keep this posting short today, seeing as it is quiet, but will be back on again tomorrow.

Take care people.

Friday, July 15, 2011

Funky Friday again

Well here we are again another Friday, and we all know what Fridays are, Fridays are Methotrexate day, not a good day as the Methotrexate makes me feel really lousy for about 3 to 4 hours after taking them and today is the day I increase the dose from 10 mg to 12.5 mg so wish me luck folks.

Well today has been quite a good day really, I Pauline and Gordon came round about 11.00 am for an hour or so to have a chat and a coffee with me, and that made me feel better, just as they were leaving so the District nurse turned up tp do the dressing on my toe, so that was good, it is healing nicely, and about 2.45 Had a visit from Jane Bonnie's  Dad. Dave stayed for about 2 hours, had a nice chat and it was nice to meet him.

The District nurse phoned this afternoon to say that she has changed my blood test from next Tuesday to next Friday so that I can have my toe dressed at the same time so perhaps sanity is coming back into the NHS.

Phoned doctors Surgery to get result of Blood test from Tuesday and it was not in yet so will have to phone back  Monday to get the result.

The Rain has stayed away so far today which is good so weather has been quite pleasant with an outside temp of 18 degrees C and Humidity of 56% so breathing has been easier today, had a nice Puree Carbonara for lunch, enjoyed that so trying to decide what to have for tea.

So that is Friday over for another week, all in all it has been a better friday than most and long may it continue, so until tomorrow, cheerio all and take care.

Thursday, July 14, 2011

17 hours is a long day

Good day to all you lovely people out there in the big wide world, another day is upon us and getting near to the end of another week,  woke at 6.30 this morning and the one thing that I will say is that I am starting to feel more positive about the way that things are starting to take shape, I know that there is a long road ahead with the treatment and, that for the foreseable future I am not going to be very mobile, and also there are going to be days when I have set backs but this is part and parcel of this horrible muscle disease, so it is a case of going with the flow and deciding that apart from all this I need to get my life back.

Facebook has been one of the tools I have used to keep in touch with Family and Friends while I was in Hospital and also while I am stuck at home and has kept me sane, and writing this daily Blog has let me express my feelings as well as keeping everyone informed of how I am coping and progressing, also it has helped a couple of other people who have this horrible disease, for those that are interested I have been writing this blog for about 12 days and have people reading it in Great Britain, Canada, Australia, Germany, Switzerland and France, I also use Twitter as well to reach other people who suffer from Myositis.

Getting my life back is the main objective for me at the moment, so I decided that whatever else I cannot do, I can still use my Laptop, so running a few things through my head I decided that I would start a home based business manipulating and supplying, images for the hobbyist,  This is one area that I have a fair Knowledge of and is also something I can run from my laptop 100%, so have set up "New Horizons" a Graphic and Photographic Studio.

So there we have it a new business to get up and running along with the treatment for the Dermatomyositis, Cooking the Puree Meals and dealing with all the problems with DWP and the NHS, life is full of fun and looking at the title of this post makes me wonder  Is 17 hours really enough hours in the day ???

Back to today, it has been a good day today, Pauline came round for a couple of hours this morning and did a bit of cleaning for me, she also swept the front forecourt and took away some washing, and just to let anyone who is interested know, her hip is a lot better now, her blood tests were ok and it looks like she had had a mild dose of Shingles

So until Tomorrow People Keep Well and keep safe, and remember "if when you wake in the morning all around is Chaos" then rest assured you are in for a really crap day !!!!!!!!

Wednesday, July 13, 2011

Wednesday update and overview.

Again it has been another good day so far today. The weather certainly helps with the breathing as the humidity is quite low at the moment 52%.

The Muscle weakness is still quite bad, especially in the morning when I wake up, and before I take my medication, it takes me about 3 to 4 hours in the morning to get myself together, usually wake between 5.30 and 6.00, have a coffee and get myself sorted for breakfast and medication  at 8.00 to 8.30. My carer comes at 9.00 and so by 9.930 I am ready to face the day.

Dermatomyositis: This seems to be starting to come under  control as far as the Muscle flares are concerned, normally have a problem if I try to do to much over an extended period or if I go out into the Sunlight, trouble is with this condition you don,t realize how weak the muscles are until you try to use them.

Dysphagia: The Dysphagia ( Swallowing problem) has not improved much at all, noticed very slight improvement in as much as I can now manage small textured items but the throat muscles are still very weak so at the moment I am still stuck with the puree diet.

Twisted Stomach:  This is causing a problem with Acid Reflux, it seems to be that as I am starting to eat bigger meals ( Although pureed) so the Digestive juices are being produced to digest the food but due to the muscle weakness in the Esophagus, the acid is being forced back up into the throat, ( this is due to the cup and spill condition of my Stomach) not at all pleasant and can add to the difficulties with swallowing and can cause heart burn and indigestion. Although I take Laprazole it does not help that much, and am waiting for the consultant to check  with a gastro specialist to see how best to bring this under control, probably with Omoprazole (Pump inhibitors).

So there we are folks an update and overview of progress so far in my battle against this horrible condition. I am keeping a positive outlook on the whole thing and maintaining a sense of humour as well ( I Hope) as I know that I am making progress by the positive things that are taking place

(1) Reducing the Steroid Medication
(2) Return of Appetite
(3) weight Gain
(4) Eating More ( Although Pureed)
(5) Being able to whistle
(6) getting bored with daytime TV

Just had lunch and had Salmon with Brocolli in a cheese sauce and very tasty it was as well, think I might have to compile a leaflet of puree recipe's for people with Dysphagia.

Have fun people and stay safe.

Tuesday, July 12, 2011

It Gets more like monty Python by the day

Hello you lucky people, as the song goes  "Always look on the bright side of life", or in my case never take at face value what the powers that be tell you, as you can bet your bottom dollar that if the system can cock it up, then it will, but on saying that it does make the days interesting and gives me a laugh along the way, Oh and just to let you know the "Dermatomyositis" is going along splendidly,  So lets look at todays little scenario that unfolded at the Health Centre.

As Usual on a Tuesday I Go to Eastney Health Centre for a Blood test, {the reason being that due to the medication being used to suppress the muscle inflammation, I am at risk of picking up infection,s a lot easier, due to a suppressed immune system.} I also have the district nurse come in weekly to dress a bad infection on one of my toes, however the District nurse thought it would be a good idea if she arranged for my toe infection to be cleaned and dressed at the health centre when I have my Blood test, "Reasonable I thought, no problem with that" !!! Cue Monty Python, the Goodies and the Goons !!!!

Arrived at health centre at 10.30 along with Pauline and went to reception to check in here is how the conversation went.

Me: Hello Francis Smith for 10.40 appointment for blood test.
Receptionist : Hello here you are No. 14
Me : has the district nurse arranged for my dressing on my toe to be done by the Practice nurse.
Receptionist : Let me check on the System.
Receptionist : No, Nothing for today but I have appointments for the next three weeks.
Me: That,s strange should be one for today
Receptionist: I will write down the times for you on an appointment card.
Receptionist: Next week 19th july at 12.10
Me: But 
Receptionist: Tuesday 26th July at 08.30
Me: But 
Receptionist: Tuesday 2nd August at 12.10.
Me: You are Joking, you say that I have to come at 10.40 for a blood test and then come at another time for my dressing,s to be done, this should have been arranged to follow the blood test.
Receptionist:  So what are you saying.
Me: Cancel those appointments and I will contact the district nurses and they will have to carry on doing it at home.

In the words of Victor Meldrew "I Dont Believe it", so there you have it folks my entertainment for the day, however got back home and phoned District nurses so they are going to resume the dressings on a Friday. what you think should be a very simple time and cost saving excercise turns into a episode from a soap opera.

So apart from that excitement it has been a relatively quiet day today, nice to see `Pauline, her hip was easier today, I have no problems so better get on as it is nearing medication time, then an afternoon nap.
Take care folks.

Monday, July 11, 2011

A Good Monday

Hi all, well here we are Monday again, the weather is quite pleasant today, some sunshine but not over hot so that suits me fine.

Well today is a Positive day, looking forward into the future, although my muscles are still very weak and will be for the foreseeable future, so how to pass the time. In True Smith Form defeat is not an option so I am restarting my Graphic design business, don,t need muscles for that just my brain and a computer, and although Card making is out of the question for the time being I can still manipulate the graphics on the computer so am starting "New Horizons" with the aim of supplying images to the hobbyist to there specification, Will it work, " Havn't got a clue but its better than sitting around watching TV all day long !!! Boooooring !!!!!.

Had a visit from my Brother Pat today, he was working in Portsmouth so popped in for an hour to have his lunch, It was nice to see him and to have someone to chat to. had my lunch when he left so its been a pretty good day today so far,  one lesson learned from Yesterday is that I must not eat anything that is slightly acidic. opened a tin of mackrell fillets in mustard yesterday thought I could mash them down and have them as a snack with a wheat biscuit, not a good idea as they took some getting down gave up half way through but the bit that I did eat kept repeating on me all night so very uncomfortable still live and learn.

Well thats it for today folks, off to clinic tomorrow for weekly blood test, Pauline will come with me so apart from that I hope this week goes as smoothly as last week,

Sunday, July 10, 2011

Well here we are again another Sunday, although to be honest one day is much the same as any other day at the moment although hopefully it won,t be long before I can start to separate weekdays and weekends.

Looking back on the week just gone by I must say that it has probably been my most positive week since early November when all this lot kicked off.  This week I have started to be able to whistle again, to eat biscuits without Dunking them and also find my appetite returning, and although there has been a very small improvement in my Dysphagia, it has least been an improvement. Also I am starting to put on a little more body shape and find that my Muscles although still very weak, are starting to get feeling back into them although having to put up with aching muscles is not my idea of fun.

This week I have Reduced my Steroid Medication down to 30mg per day and have also increased the Methotrexate up to 10 mg per week on a Friday, and from next Friday it goes up to 12.5 mg per week, The blood test results were OK so hopefully the improvement of this week will continue into next week.

 Pauline and Gordon came round yesterday and took me to Asda to do some shopping so am stocked up for the week ahead, will have to really think about starting up the family history research again as I have let that slip over the last few month,s but need to give myself something to do during the day asI am getting very bored with daytime TV. I have no hospital or doctor appointments this week apart from the blood test at the clinic on Tuesday so I think I will set aside a 2 hour slot each day this week to go through all the research material and photographs, and get them into some kind of order.

Gervase is coming round to see me this afternoon so that will break up the day, it is always nice to see him although he and Leanne were out late last night at one of there mates birhtday party so he will probably come round and fall asleep in the arm chair.

Oh Well not a very exciting posting today, so will go and think about what to do for lunch today, so will be back tomorrow with another exciting episode of this ongoing story.

Saturday, July 9, 2011

Shopping for a puree diet.

Hi there folks, another bright Saturday here on the South coast of the UK. The sun is shining and although the wind is a little breezy, it is a very nice day. Woke about 5.30 this morning had a coffee and fell asleep again until 7. 45, so a good start to the day. Spoke with Pauline this morning and her and Gordon are going to come today and take me in the wheel chair to Asda, at Fratton to do some serious food shopping.

I have found that  the swallowing problem (Dysphagia) has got marginally better over the past week, I am still unable to swallow solids so am stuck at the moment with the puree diet, so it is a case of trying to find items that can be pureed but still give me the nutrients that I need and also the taste and some texture.

In the early stages of the puree diet the things I found easiest to puree was cauliflower Cheese ready meal, and also pasta but as I have progressed so I have tried other items, some worked, others did not but it has been fun trying.

Ready meals are always a good start for a puree diet, I have found the chicken Hotpot,s very successful, along with Chicken Korma and Bangers and Mash. I have also tried steaming vegetable like Sweet Potato, Broccoli, Swede, Carrot and Cauliflower, and mashing them down, Salmon and Plaice are Good fish to Puree.

in the tinned food,s I found that Chicken in white sauce and tinned Hot Pot puree down very well as do a variety of tinned curry's, and also big soups.

Cream of chicken soup and cream of mushroom soup are ideal for adding to ready meals to make them easier to puree and the Bisto cheese sauce and white sauce go well with vegetables and are economical to use.

Deserts are easier as Yogurts, and custards are easy to swallow along with fruit puree and cream, so you can see that although I am confined to a puree diet it is not all doom and gloom and I do get a variety of tastes along the way, take today for Example:

Breakfast : 40gm Puree Porridge with Jam. Orange Juice, Coffee.

Mid Morning : Yogurt. Fesubin Build up Drink, Coffee

Lunch : Cream of Chicken Soup ,  Chicken in white sauce with Cauliflower Cheese,  Strawberry Custard, Coffee

Mid Afternoon : Fresubin Build up Drink,  Coffee, Malted Milk Biscuits.

Tea : Vegatable Soup,  Creamed Rice with Jam, Coffee, Rich tea Biscuits.

Supper : Toffee Custard Pot, Horlicks or Ovaltine.

So as you can see not to bad a menu.

Well back home from Asda with this weeks supplies a couple of new ideas to try out so will let you know how I get on, time for a rest now as the muscles are starting to flare up a little bit, but not as badly as a few weeks ago so things are looking like they are moving in the right direction.

Friday, July 8, 2011

Good Days, Bad Days and Fridays.

Good Morning people, here we are again Another week gone by, all in all its been a relatively good week with many positives and few negatives and long may it continue, however I must learn to be patient and not to try and do to many things to early.

thought it may be a good idea yesterday to try and clean the washroom downstairs, as the sink and toilet needed a bit of freshening up, also a little tidy up in the downstairs bedroom, probably not the thing to do but felt it needed doing, however it is now obvious that my muscles are still to weak to have to much exercise as after about 30 min,s I was suffering with muscle pain and felt absolutely worn out. so must  remember that in future, also today is friday and is the day I take my Methotrexate medication, just increased that from 7.5mg to 10 mg and it always leaves me feeling tired for about 4-5 hours after taking it so today is a day for resting, sleeping and daytime TV.

So there we have it folks, not a very exciting day today, the weather is still very unsettled but at least that makes the breathing easier, also the Acid reflux seems to be less today, although the arms and legs are still very stiff and imobile after yesterday, still we live and learn, and  hopefully  increasing the  Methotrexate will help to bring down the muscle imflamation, once that is under control then we can start physio to rebuild the muscles, I anticipate that it will probably be about  October when we reach that point.

Update at 15.10pm : As mentioned earlier on the blog, because I am on Methotrexate I have to go for a blood test every Tuesday at the GP Clinic. Phoned this afternoon to get the results from Tuesday, it is all ok, no problems. the white blood cell count was up but that is expected because of the steroids I am on, and these are being reduced.

Well folks hope you all have a good day and stay safe and well.

Thursday, July 7, 2011

Hooray for Government Departments.

What you may ask is the title of this posting got to do with Franks Dermatomyositis, the answer is of course "Not a lot". Today has been relatively  uneventful apart from one letter which I will come to in a minute. the sun has all but disappeared from Portsmouth and the rain has set in with a fairly gusty wind, which in all honesty suits me as it makes breathing so much easier, so today is a good day.

However dealing with an illness/condition is not always about symptoms, set backs and hospital visits, other factors come into play as you try to cope with what is happening to your body and your life, and one such event was my dealings over the past week with our Department of Works and Pensions (D.W.P.)

After being returned home from hospital under a care plan 7 weeks ago (has it only been that long), I decided after reading various literature that I would apply for Attendance Allowance as I needed help with various items throughout the day and night so duly sent of and received the forms back in the post.
After much head scratching and checking by Gervase the forms were completed and returned to D.W. P and now the fun begins.

On the 25th June I received a letter stating that my claim had been received on the 14th of june and was being considered. On the 28th June I received a letter to say that I am entitled to Attendance Allowance. along with the letter was a leaflet saying that I may be entitled to extra pension credit as I am now entitled to Attendance Allowance.

When checking my bank account on Sat 2nd July I notice that the pension credit for this week had not been paid in ( Peculiar I thought, perhaps it is to do with the AA) anyway on Monday 4th July I phone DWP and ask about why my pension credit was not paid this week, the chap on the end of the phone could find no reason why it was not paid and said that he would email the relevant dept and it would be paid within 5 working day,s but said it was not to do with the claim for AA as that was a different issue.

However  on tuesday 5th July I receive a letter from D.W.P to tell me that I may be entitled to extra pension credit due to receiving AA and would I fill in enclosed forms and return, so filled in forms and Pauline posted them back on the same day.  Now Today. I receive a letter from D.W.P giving details of my Pension Credit Now the Irony is that My pension credit stays the same (as I get a Pension Savings Credit NOT a Guaranteed pension credit,) the other thing is that the letter is identical in every word apart from the date to the one I received from them on the 19th January when this years pension was announced. so what do we learn from this little episode, probably the one thing that comes to mind is that there is very little communication between government departments, surly in this day and age technology allows for  almost instant updating so one can only assume that human error is a major concern. the other factor that comes to mind is that these departments are spread around the country, I dealt with a chap in scotland for the Pension from Cardiff and the AA from Blackpool, Get it sorted Cameron, here is where a lot of money is wasted, so 5 letters 1 phone call and a few hours work to tell me what I knew in January.
Still it made the week a bit more exciting. Have a good day people.

So there you are folks it is not all about the Condition, other factors come into play as well

Wednesday, July 6, 2011

Hi Ho, Hi Ho, To the doctors we will go.

As the title says, off to the doctors today, woke up this morning and decided that I needed to phone the doctor to get in and have my chest checked out, have been a bit congested the last couple of mornings so following the advice of my Consultant Dr Gibb , I  contacted the GP to have it checked out. Went to Doctors at 12-30 , Pauline took me and I saw Doctor Richbell, everything checked out Ok ,ie Chest, Blood Pressure, Temperature, Pulse  etc, so as I thought it is to do with the Acid Reflux that is being produced by this "Cup and Spill stomach " that I have apparently got.

For those that Don,t Know as well as being diagnosed with Dermatomyositis, I also have a twisted stomach ( Cup and Spill ) which was Diagnosed after an Endoscopy  in Dec 2010, so this further complicates my Muscle condition.
With a cup and spill stomach, acid reflux is a common problem, it is where the stomach produces excess acid to digest food and excess acid finds its way up the oesophagus into the throat and chest cavity, this also has a bearing on my ability to swallow as the pressure of the Reflux, is greater than the pressure of the food entering the stomach. ( You live and learn on this blog folks )

Back home now and all is OK with the world, another good thing to happen is that I can now Whistle again ( not for long periods though ). I lost the ability to whistle a tune last october, this was when I first started to have swallowing problems and was the onset of this condition I have, however yesterday I found that I can start to whistle again, I have no idea why I tried to whistle, just that it seemed a good idea at the time.
All those that worked with me at B&Q know how irritating it was to be working near me as all i did all day at work was Whistle and take the piss out of the so called managers. anyway I can now whistle again so something must be happening to the muscles in the region of the throat, as my speech has also got a lot better.

Breathing is easier today as the weather seem,s to be cooling down a bit and the rain seems to have cleared the humidity.

Spoke to my cousin Mike on the phone last night, had not spoken for a couple of weeks, so nice to catch up with him, hopefully Pat or Eileen in Fareham will arrange a get together sometime before the summers over so all the family can meet up again.

New Benchmark reached today : [ Not a big thing for most people but a giant step for me. I have just eaten 2 Rich Tea Biscuits, without Dunking or drinking between bites to wash it down, the first time I have actually managed to eat solids for a long time, so the benchmark has been set.] 

Tuesday, July 5, 2011

Weather on the change today.

Well another bright sunny morning, it was 6.30 when I woke today, apparently the weather is going to change today got some welcome rain on the way, so the humidity should fall which will make breathing a little easier.

Of to the clinic today for the weekly blood tests, Now that I am starting to change my medication dosage I have to go for a weekly blood test to keep an eye on how the medication is going and also to look for any untoward side effects, but at least things are starting to go in the right direction,

Back from Blood test, results take about 2 to 3 days so that is ok, Pauline came with me and then came back for a coffee, so nice to have someone to chat to. After all the problems with the DWP on the phone yesterday, about a missing pension credit payment this week and there insistance that they can see no reason why it was not paid this week, ( I will get it by the end of the week ) today I received a letter from DWP stating that as I have been awarded Attendance Allowance that my pension credit may be increased so could I fill in the form and return to them. Now rocket science it is not but could they not have told me this yesterday when I was on the phone to them.

Oh well looks like the day is going along quite nicely, looking forward to seeing Gervase tonight, he pop,s in on the way home from work on a Tuesday and Thursday to see that I am ok.  just settle down now to watch a little daytime TV """"" Boring """""  trouble is not a lot of energy as going to the clinic today took it out of me a bit, had a nice puree hotpot with mashed carrot, swede and sweet potato today for lunch and enjoyed that, roll on tea time. well folk hope you all have a great day today and thanks to all my extended family here and in Canada for the messages of support.

Monday, July 4, 2011

The start of another week.

Well hello again, the start of another week, well a good day so far today, although breathing is still laboured I have learned the lesson from Yesterday and will keep out of the direct sunlight. probably need to get a wide brimmed hat for going out in the wheelchair, maybe get a "stetson".

Had a chat with my brother pat today, he phoned to see how I was doing, it is re-assuring to know that the family is there in these times and are keeping in touch, Pat kept me up to date with the family in Fareham.

The biggest problem I have at the moment is with the care plan that I am receiving, it is due to finish this week, and yet I have had no contact from social services regarding re-assesment of my needs at home, tried phoning and speaking to some one but just keep getting passed from pillar to post, so still no nearer finding a solution, had the same with the DWP this morning regarding a missed Pension Credit payment, after so many questions still no idea why the payment was not made today,  the outcome was you should get it within 5 working days,  so thank you DWP.

Anyway that is enough complaining for today lets end on a positive note, I have decided on Salmon with a cauliflower cheese today for lunch so time to break out the blenders, and get blending as I feel like I could eat a banquet. trouble is it would just get stuck halfway down. oH well roll on the day that I can get back to eating properly although that is still a long way off, I WILL get there.

Sunday, July 3, 2011

awake bright and early today

Well here we are again on a very sunny Sunday morning. It is 7.30 and breathing is easier at this time of the day, so not looking forward to later as when the temperature rises so the breathing gets a lot more of a problem, it gets better as the temperature and humidity falls so early mornings and evenings are the best time for me at the moment, the reason for this is that the muscles that work the lungs are affected by this condition and are also weakened,however as the medication becomes stabilised, then exercises with a physiotherapist should build up the muscle strength.

Gervase came at 11-30 today and took me to Asda to do some shopping ( Thank You Gervase ) he is getting used to pushing me around in the wheel chair ( Payback time for the years I spent pushing him in a baby buggy in the early 80,s ) still amazes me how inconsiderate some people can be with there shopping trolleys, when confronted with a wheel chair user though.

One thing I did find out today is that I should not father Children for 3 months after I come of the Methotrexate, so sorry girls, you missed your chance.

Oh well 13-30 now, so time to get out the blenders and start to get lunch ready, pureed pasta and chicken with basil today I think, and then a nice relaxing afternoon of old movies on TV.

So a good positive day today, feeling hungry as appetite returns with a vengance, Breathing laboured at the moment but have the fan on so at least air is circulating. Seem to have an excess of Acid reflux today, hopefully something the doctors can look at and bring under some kind of control,( not really a pproblem to be but certainly does not help with the swallowing ) it is more uncomfortable than anything else.

Update 20.00 hours sunday 3rd July 2011
Well its now almost 20.00 hours here in the UK, the weather has cooled although the humidity is still very high, had a flare up of very red knuckles just after getting back from Asda today and on further investigation it seems that i should not go out into the direct sunlight as this can cause the imflamation of the muscles to increase therefore giving what is known as a muscle flare, Oh! well live an learn, will try and keep out of the sun between 11.00 and 16.00 hrs. 

Saturday, July 2, 2011

The Start of July 2011

Well here we are, starting July, does not seem like it is 6 weeks since I was released home from QA, Hospital at Cosham and 9 weeks since being admitted to Southampton General Hospital and being diagnosed with this crap condition.

Getting to Grips with Dermatomyositis is hard, having to rely on other people to help me do everyday tasks is what I find most difficult to come to terms with, My thanks really do go out to all the support and help I am receiving from family and friends.

My Dysphagia ( difficulty with swallowing) has not really improved much at this time although it is early days in the treatment so really cant expect to much at this moment in time, so puree meals are still the order of the day. Muscle weakness and immobility are still there although we are now getting into a treatment plan with the medication so hopefully we will see some improvement in the weeks ahead.

I have this week Reduced my Steroid,s from 40mg per day to 30mg per day ( bearing in mind 8 weeks ago I was on 60mg per day) and am starting to increase the Methotrexate fro 7.5mg per week to 15mg per week, this being phased in over a period of 6 weeks.

Because of the Metotrexate I have to have blood tests every week to keep a check on side effects and infections.