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 25, 2012 § Leave a comment
I consider myself to be a pretty well read person. Over the years, I’ve read them all, Camus, Steinbeck, Flaubert, Saki, even Shakespeare – which are actually pretty good reads, once you get past the language barrier.
But, when bad things happen in my life, I turn to my ‘comfort books’. A comfort book is one that you may well have read lots of times and is most likely not one of the great books of all time (well I believe at least one of mine is as it happens) but it’s an easy read, you know it well and it has a quality that makes you feel a bit better when you hear those words, yet again, roll off the pages.
My two comfort books are, The Hitchhikers Guide to the Galaxy by Douglas Adams (a clever, funny and classic book for all time) and The Stand by Stephen King.
The Hitchhikers Guide is held for occasions like deaths in the family, whilst The Stand has been my comfort book through this horrible illness. It’s probably not the best choice of book to read when you have an illness that, for example, in my case anyway, gives you breathing problems, as the story is about a flu plague that kills off most of the humans on the planet.
Because I’m so tired a lot of the time and find it hard to concentrate, I’ve resorted to using the audio version of the book. At first I thought this was…cheating…I’m not sure why I thought that: Having it read to you, is just the same as you reading it yourself. It evokes the same emotions, makes me think about the various characters in the same way, I’ve analysed some of the underlying metaphors used by King throughout the books, etc. So I’ve gotten over my thoughts of cheating by audio and I’m going to embrace this medium.
Why The Stand, why is this my illness comfort book? I thought about this last night as I finished the penultimate chapter (which by the way has taken me 2 months to get to!) and I realised that it wasn’t the main theme of the book, which is good vs. evil (we all love that theme, don’t we). No it was the underlying theme of ‘the journey’: I’ve been on a journey too, not a particularly nice one, but a journey none the less.
The journey in literature is a very common theme, The Wizard of Oz, Don Quixote and so on. Journeys don’t have to be literal ones about travelling a road, they can be metaphorical journeys through life too, of course. I think that I’ve latched onto The Stand because of my own metaphorical journey through illness. The journeys of the characters in the book feel comforting to me, like they’re going through the same pain and awakenings as I am. They can’t literally talk to me, but I feel sometimes as if they are and that has been a help throughout the last 2 months. Thanks Mr King.
Tell me if you have any comfort books?
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 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!