November 2, 2012 § 4 Comments
I’ve been having these really odd side effects from, I assume, the prednisolone (could just be a manifestation of my own personal craziness of course). I thought I’d share them with you for your amusement.
Crazy side effect 1: Spangly light beams from my eyes
Yes you read that correctly. For a few weeks now I’ve had this really odd feeling that my eyes are shining, spangly light beams out of them. It sort of makes me feel like I’m some sort of super hero, ‘Spangly light beam woman!’
I might make myself a costume with a big S on the front…hmmmm…actually I think that one’s already taken by some other (less powerful) super hero.
I quite like this side effect, I must admit, however, like all good things, it seems to be coming to an end… I’ll miss you spangly light beams.
Crazy side effect 2: Comedy hands
I know this is going to sound like I’m mad as a bat, but read on, as this is really how it feels.
Unlike spangly light beams, which is a daytime phenomena, my ‘comedy hands’ seem to only manifest through the night. I wake up in the night to feel like my hands have grown massively in size and are very heavy. It’s such an odd feeling. It’s a bit uncomfortable. My hands feel like they are several times their normal size and clumpy and heavy. Eventually it goes away, but it is THE most odd of feelings. Again, like my spangly light beams, this effect seems to be going away as Im tapering the prednisolone.
It does make me want to sit up in bed and put my hands out, in jazz hands style and sing the “LumberJack Song” (you can’t help but love Micheal Palin).
As far as side effects go, these two are pretty trivial, but I do wonder what the steoids are doing to my mind to make me feel this way, now that is scary.
October 30, 2012 § 7 Comments
I noticed that this weeks WordPress ‘Weekly Writing Challenge’ is to finish the sentence, I wish I were.
It got me thinking about how to finish that sentence:
1. Do I wish I were, prettier? Certainly wouldn’t mind the ol’ steroid induced Moonface going away, but only tapering the steroids will sort that one out.
2. Do I wish I were thinner? Well again, steroid induced weight gain is a real problem I’d love to resolve without starving myself.
3. Do I wish I were in some lovely place, like Kangaroo Valley in Australia that I travelled to before I was ill? Well yes, but I’m too sick to travel for a while yet.
As you can see my, I wish I were sentence, seems to be heavily caveated.
It made me realise that really there is only one sane ending to that sentence, for me or anyone else who is facing similar problems (of which I know many of the regular readers of this blog have).
To us sicko’s the only way to truly end that sentence is with the words…not sick.
So WordPress, on behalf of all of us, in this special club of people with horrible/serious/chronic/debilitating illnesses, the sentence is:
I wish I were…not sick
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 16, 2012 § 17 Comments
It’s about time we talked about the horror of waking up one day to see you’ve turned into a pig, well sans curly tail, but it’s only a matter of time before the full transformation is complete.
One of the side effects of taking high dose corticosteroids, like prednisolone, for more than a few weeks, is the appearance of ‘moon face’. It’s kind of hard to describe and all you’re going to see of mine is that shadowy image above, but I’ll try to describe it (I know it doesnt look ‘too’ bad in that picture, but that’s why I choose it – don’t want to scare the readers!). Before I start, I should point out the not everyone gets this side effect, there are some lucky b^%&&rds who get away with it.
Your face becomes quite taut. Im not sure if it’s caused by oedema or fat redistribution, but it also feels lumpy in certain areas too, but the lumps come and go, very odd.
I do look a bit like the moonpig.com logo – my cheeks certainly resemble that adorable piggie wig, except I don’t look adorable, I just look weird.
I look (not very often these days) at myself in the mirror and it really doesn’t look like me. Well it sort of does, but sort of doesn’t. A kind of shadow of who I was.
I’m certainly not brave enough to bear all, as a full frontal in this blog post, as Suz did with her ‘Bald as an Ostrich‘ outing of her chemo induced bald head. Anyway, Suz actually looks lovely and people can honestly say to her she looks cool and beautiful. Whereas with the ol’ moon face, really, honestly you can’t, it’s certainly not cool and really NOT attractive.
It can be funny though, I am able to take the mickey out of myself and make people laugh about it. And my friends and family are very kind. They keep saying it looks like it’s going down – it isn’t, but it’s really kind of them to say so.
My niece, a medical student, who has promised to find a cure for dermatomyositis, suggested I take photo of my piggy face every day, to the point where it has eventually gone back to normal (i.e. as my dose of prednisolone tapers, the magic number being under 20mg a day, apparently) . Then make a flick book out of the photos so I can see the transformation. A great idea, but I don’t think I will do it, as once this is over, I really just want to forget it.
On the positive side and you do have to find a positive in things like this, otherwise you’d end up very down indeed. My nose looks much smaller (compared to the expanse of my cheeks) and my skin is very clear and probably the best it’s ever been. Also because of the tautness of the skin, I have no wrinkles whatsoever, wooo hoooo!
Oh and a final idea, how about Moon Facebook. It would allow me to have a current photo up without embarrassment, as it would only allow people with Moon Faces to become a member, we could then moan on about our fat cheeks without any feeling of guilt or shame: Damn, we could even have a competition on who’s cheeks are the biggest.
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!