October 19, 2012 § 2 Comments
I went to the specialist dermatomyositis clinic at the Royal Victoria Infirmary the other day. I am incredibly lucky to have a specialist clinic, so close to where I live for such a rare disease. It is probably because my neurologist has a special interest in myositis: Whatever, I feel quite lucky.
And with dermatomyo-shite-is you get two for the price of one, so I see both a neurologist and a dermatologist. The dermatologist checks out my skin for any signs that the derma part of the disease, i.e. the rash, is causing any trouble. Fortunately for me it is almost gone, apart from some faint traces of it still visible on my hands: Apparently, the hand rash is usually the last to go.
The neurologist tests my muscle strength and also decides upon any changes to current treatment. And it’s the neurologist (bless his cottons) that has decided to taper the prednisolone, so I now have, 30mg one day and 0mg the next.
I actually shouted “YIKESY!!!”, when he announced I would be taking 0mg every other day, at which he exclaimed, “why yikesy?” To which I said “because it’s scary…MAN!”.
Anyway, Ive been on this regime for a few days and I can report that I seem to be getting a delayed effect. On the day I take 0mg prednisolone I am actually not too bad, but the next day, urgh, Im incredibly tired, have more significant pain and feel nauseated – pretty bad when my sister in law made the most amazing vegetarian, gluten free, trifle for us, which I have named ‘The Trifle of Delight’ as it looks so good.
However, I will persevere. It’s not like the last time where I was incredibly ill and had to go back up to the higher dose, that must be a sign I’m improving too. The good thing about this dosage is that it is under the magic number of 20mg a day (averaged) so I’m hopeful some of the side effects of the steroid will abate, in fact the neurologist said some of them should, not all, but some – let’s hope that means bye bye Moon Face.
October 13, 2012 § 4 Comments
In the area of the UK where I live there’s a scheme called ‘Healthy Life’ where if you’ve had a heart attack, or cancer, or other serious illness you can be referred by your GP to have a fitness assessment and a plan of action built for you to get you fit again. So, my GP referred me to this scheme and I had an assessment by a nurse, who has put my under the wing of a fitness instructor to…get fit…
I had my first session on Friday. To say I was pathetic overstates my capabilities. I almost started crying, trying to do leg presses. I eventually managed 2 on the lowest setting. I cried because I remembered going to the gym before this disease hit me and being able to do leg presses to my hearts content. It really hit home how poorly and weak I am. I did do 5 minutes on a exercise bike, again on the lowest setting and did some mini arm exercises and another 5 minutes on a treadmill: It’s sad and hard, but it is a start.
I am in a bit of pain today (the day after as I write) especially in my hips, but I have to keep going. The doctor says I need to find my limit and not overreach it, pain being the indicator. But I’m in some pain a lot of the time anyway, so how do I really judge if it’s the gym or the disease causing it?
Whatever, I’m going to another session tomorrow – this road to recovery may be long and hard, but at least I’m on it.
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!
September 29, 2012 § 2 Comments
Friends and family kept going on saying I should get one. But I kept resisting because it just seemed so final, so accepting of the disease’s badness. In the end, I was at a small family gathering and my sister in law’s, mother, had a rather dapper one with her, so I ‘had a go’ and actually it was pretty good. It was like something to lean on when you’re tired: Not a bad thing at all. In fact, I felt kind of cool, like a female version of Steed from the Avengers (although he used a brolly rather the a stick).
So, I bit the bullet and got one. It’s very cool, it has silver spiral galaxies on it.
I’m going to use it and not be embarrassed, or feel ‘old’. I’ll not use it all the time, just when I really need a bit of support.
Also, it has a useful, dual use. I can use it to whack Steve with when I need a glass of water, or a slice of toast, etc.
“whackkkkk! Steve I need a drink”
“whackkkk! Steve get me a slice of toast”
So it is a very useful thing indeed.
Oh and I’ve also found it’s good for poking the dog when she makes a smell, so she moves away from within my nose range.
My whacking stick (me looking a bit grumpy and fat of face (more about steroid ‘moon face’ fun in another post):
September 22, 2012 § 3 Comments
I just thought that it might be nice, this Saturday, to encourage whoever reads this, to dance naked around their living room, arms flailing in the air, singing along to The Specials rendition of “Enjoy yourself, it’s later than you think”.
I can’t dance right now, but soon, very soon, I will be able to and I’ll do it (I might keep some clothes on though, I am British after all).
Might be a good idea to close the curtains!