December 5, 2012 § 11 Comments
The thing about dermatomyositis is that is can permanently damage muscles and that’s something I’ve been hoping wouldn’t happen to me. If you’ve been reading this blog, you’ll know I’ve got a ‘gammy’ leg – ‘gammy’ translating to a lot of pain in my left leg and associated swelling, when I do a bit too much exercise (by too much, we’re talking here of minute amounts of exercise, not climbing a mountain or anything).
So the other day I went out for a lovely lunch with my daughter, Elaine. We went to a suburb of Newcastle upon Tyne called Heaton, where there’s a few nice vegetarian and generally bohemian type cafes, over a fairly short distance.
In the first cafe we went to, called Sky Apple Cafe, we had a very delicious all day vegetarian Big Breakfast. It was such a lovely bright, crisp, blue sky, winter day that we decided that we would walk to another cafe, Heaton Perk, for cake and decaff coffee, the walk being about half a mile.
Now recently I’ve been building up my strength and stamina and I’ve been able to walk about half a mile (with a couple of rest stops) so, I was fairly confident getting to the the cafe for my cake. So, off we went, on the cold, crisp, bright day and made it, slowly, to Heaton Perk. Once ensconced, we talked about life and books and politics and how much I miss travelling. We ate gluten free lemon drizzle cake and drank steaming decaffeinated coffee and decided that life doesn’t get much better than this: Little pockets of happiness and cake.
Then we walked the half mile back to the car and off we went.
Doesn’t sound like much exercise does it. Well today my leg is swollen and very sore again. When I walk my knee buckles under me and the joint is very painful as well as the muscles around it. It’s so frustrating, not being able to even do a little walk without this happening. How on earth can I get back to where I was at this rate. However, I am utterly grateful Im not in a wheelchair like a lot of people with this disease.
November 24, 2012 § 6 Comments
It seems there are two types of people, those that shower and those that bath. I’m normally a shower person, but I used to be a bather. In fact when I was growing up, in 70s northern England, having a shower was for posh people, or those from ‘down south’. In fact, where I grew up, I’d probably have been beaten up at school if I’d had a shower (beaten up by both the teachers and the other kids…).
I eventually did become one of the posh kids and had my first own, private shower, when I bought my first house at age 30. Even then, the house was so run down that the shower was held up by Sellotape.
Ever since, I have showered, it’s just quicker and you don’t have to wait around for a bath to fill up.
But today, I was having a sore day and my chest was bad and I felt generally unwell – probably because of tapering the prednisolone. I felt like I needed some soothing, something that would ease my aches and pains and suddenly I remembered I have a bath! That strange white thing in the corner of the bathroom with shiny taps on the end that allow water to flow out of them.
So I ran the bath and yes it took ages to fill up. But when I got into it, the immediacy of the soothing effect was astonishing. I instantly felt comforted. The aches and pains flitted off into a memory and even my breathing problems subsided. I lay there in a happy bubble feeling almost normal.
As I lay there, I remembered back to my first shower after getting out of hospital for the first time; I remembered being afraid of falling because I was so shaky and weak. I remembered needing Steve to come in afterwards and change my biopsy dressings and put my creams on. I remember feeling very ill.
And as I remembered all of those feelings I thought to myself, haven’t I come a long way.
October 23, 2012 § 13 Comments
When I was in the hospital the other day, I was looking around at all the obviously ill people, and I thought, dear god I would
NEVER IN A MILLION YEARS
have thought I’d become one of them, one of those ill people, people who look ill and weak, who hobble along because they are in pain, or have weakened muscles, or have tubes coming out of their noses, etc.
But I have, I’m one of those ‘ill people’ you see on hospital visits: Sometimes the whole horrible episode just HITS you!
Then, the other morning, just for a couple of hours, I could almost taste better. It was like a brief glimpse at what I was, before…this ‘thing’ hit me, this alien thing, this disease, this interloper. It is not me, it is not who I am, but it feels sometimes that I am becoming it.
I have had symptoms for almost a year now and been very unwell since late April, which seems such a long time, but now I’m ready for better please.
Bring it on, enough is enough.
…Watch out non sickos…if it can happen to me, non smoker, fit and healthy, 30 years vegetarian…it can happen to you
October 11, 2012 § 13 Comments
I so wanted to do a blog post today on my Moon Face but I went to work and the floodgates opened.
I’m have hated not being able to work. I did no work at all for about 2 months – which when you consider I’ve not taken more than a few days off at a time and rarely even that, for over 5 years, is a big shock for my system (some may say it’s that kind of work intensity that has seen me end up where I am…I can’t really argue with that). Mind you, I was so ill during those 2 months, that I really didn’t notice it much as I just slept a lot.
But as I’ve increased my stamina and the drugs have worked their magic on me, I’ve wanted to return to work, not just for my own sanity and because I enjoy my job, but also because other people in the micro company I work for, have had to cover for me and that, I feel uncomfortable about – even though they are wonderful and would NEVER say anything about it.
In the last few weeks I’ve worked up from doing a couple of hours here and there, to more hours per day and then today, the floodgates opened and I had to deal with various issues and concerns and management type problems and I’ve spent hours on the phone and sorting things out. I am UTTERLY exhausted and sore and I feel physically sick. Im not sure how I am doing this post, other than running on some sort of adrenalin, which I’ll pay for tomorrow.
Saying that, I do have a sense of achievement and almost satisfaction. But it scares me, really scares me, that I won’t be able to handle things consistently and will end up having a crash, or worse my disease will flare up – stress being a factor in flare ups. My consultant wanted me not to do this, yet here I am doing it, back to the bad old ways. Another worry is that others will not understand the complexity of this disease (dermatomyositis) and will think I’m fully better, like after a bout of flu or something, and their expectations will, as evidenced today, draw me into the full on, hard core, world of work. I’m afraid, very, very afraid, once you’re on this ride, it’s hard to stop it again.
Why do we make ourselves work when we clearly aren’t well enough. I know I’m not alone in this as Suz does the same thing. It’s dangerous and very stupid, yet I know, If I am able to and haven’t crashed, that I’ll be back at my desk tomorrow. I do have a sneaking feeling that it’s made worse by being a female in a male orientated industry. Oh, I didn’t mention what I do. I work in product development, specifically product strategy and futures and it’s my job to understand where our products need to be, by analysing the requirements and expectations of people like yourself reading this blog. As a woman in this industry I always feel I need to prove myself, therein lies, most likely, the core problem. But thats another long and arduous story.
Fortunately, my desk is in my home, but the stress is just as bad here as in an office I can assure you. I’ll try to rest now, tomorrow hopefully I won’t crash and maybe my stamina will hold out.
After all…the workers united will never be defeated!
October 6, 2012 § 18 Comments
When my daughter was born and until she was about two and a half, she hardly slept. Well, she did, but it felt like she hardly slept. She definitely woke at least four times a night. I was exhausted all the time, it was horrific and I was desperate for rest.
I am now experiencing my second bout of extreme exhaustion, this time through illness and not children. Since before I was diagnosed, probably around May of this year, I’ve been experiencing, extreme, all encompassing tiredness. At one point I was sleeping between 14-18 hours a day. The tiredness has decreased with my treatment for dermatomyositis, but it hasn’t abated: And this week, I’ve been particularly bad.
“Oh, but you’ve got enough energy to write a blog post, etc.”. I hear you say. True, I am able to sit and slowly type, but only after a long afternoon sleep. I suppose at least I can have an afternoon sleep, you can’t, often with small children around.
My neurologist said to me the other week when I saw him, that I must not do too much, because the exhaustion you will feel will set you back. He’s right, I’ve been a fool and done way too much this week. I have been working (from home, part time, but still it’s very tiring). I spent time with my daughter and grandchildren (such wonderful, happy times, but small children are so tiring) and I had friends stay over for a few nights (good friends who did my garden and entertained me – I did ask them to wear clown suits too and sing, but they refused, tch (selfish friends).
The exhaustion you get with diseases like this is all encompassing, I’ve never experienced an intense tiredness like it – it is actually worse than the tiredness of motherhood.
I, like many others, try to fight it. I am sick and tired of having this disease control my movements, so I try to pretend to myself and others Im not so bad and then I crash, literally, its like a sudden crash where you feel physically sick with the tiredness and HAVE to lie down and sleep.
I’m still sleeping about an hour during the day at the best of times anyway, but when the crash comes, wooo, it’s sleep as much as possible.
So, carers and friends and family of the ‘diseased’, if one of us sick people say we are tired and aren’t up to, what must seem to you like the most trivial of things, such as a phone call, it’s not that we don’t care, or are being flippant about our friendship, etc. it’s because we are really, really unable to do it.
(Well unless i just can’t be arsed and you’re getting on my nerves this week – JOKING!!!!) I LOVE you all!
October 2, 2012 § 2 Comments
I received a copy of a letter from my consultant, to my GP and it said:
“Her dermatomyositis is in remission”
I felt elated, like crying in fact.
I am incredibly lucky. This hasn’t been an easy ride, I’ve had symptoms since last December, but compared to some people, I am lucky.
I was able to get a proper diagnosis within months of symptoms and before I ended up in the emergency room. The drugs have been effective and I didn’t have cancer as my underlying cause.
Of course being in remission doesn’t mean instantly I’m well again, but its part of the road to recovery. I’m still incredibly tired and have no stamina to do anything, but I’m getting there and that’s the point.
On Monday I have a fitness assessment that’ll help me to start exercising properly and getting these old muscles back to where they were again (hmmm, strike that, get the muscles much better than they were!)
So, here we go, back to being Sus: I said to a friend yesterday, “I’m so looking forward to being normal again”. At that she laughed heartily and said, “you’ll never be normal Susan”.
Here is to the next chapter in my life with dermatomyositis:
The Road to Recovery!