February 12, 2013 § 10 Comments
I havent written anything in this blog for ages. It hasn’t been because I haven’t thought about writing posts, I have. It just seems to evade me to actually write them down.
I was wondering about this and asking myself, why haven’t I been able to tell you about some of my latest health issues. Like the fact that I had some bloods done lately that found an auto antibody called PMscl which basically means I now seem to have an overlap disease, schelraderma. And this (and I need to confirm this once I have my next consultancy appointment) means I have a rare form of dermatomyositis called schleradermatomyositis (say that while eating an apple!). It’s so rare there isn’t even an article about it in Wikipedia.
So why haven’t I written more blog posts of late?
I think it is because I am starting to feel better (with, or without, the schleraderma).
I am back at work full time (although often that really takes it out of me and I get exhausted).
I feel a lot stronger in myself.
I am managing to do 4 minutes on the cross trainer, twice, most days.
I can walk much further.
I am even going to my first business meeting next week: It’s been at least 10 months since I was able to, not only travel to a meeting, but actually have the strength and stamina to sit though one. It’s in london at Imperial College and its also signficant as it’s the end of a 2 year project I’ve been involved in that I’ve somehow managed, through the illness, to stay afloat with.
Myself and Suz started this blog to help us cope with a shocking and difficult reality, of being very sick. This blog and the people who read it and had conversations with me about the trials and tribulations I wrote about, has helped me to get through what has been, probably, the most difficult year of my life, both emotionally and physically.
I know I’m not completely better and it’s an incurable disease anyway, so will rear its very ugly head from time to time, but for now, I am moving forward. Dermatomyostis may be clinging onto my shirt tails and causing some drag, but I’ll wear some skates and pull it along with me, I will no longer let it control me, I want to live.
So my blogosphere friends, I say, for now, au revoir and thank you for being there with me: I wish you all, health, love, happiness and peace.
December 23, 2012 § 2 Comments
I’ve just had a little holiday break after my treatment. You don’t realize how fantastic a holiday is and how much you need it until you take it !!! Even though the last few months have not involved much hard work, the ability to just get away and change the routine is itself refreshingly therapeutic. While of course not much happens when you are unwell, I never felt quite comfortable doing nothing – not being pre-occupied with something ‘meaningful’. For some reason being on holiday gives you permission to escape from all the things you usually worry about. If nothing else – this is why holidays are a MUST !!!! Let’s face it, the worries will be waiting when you get back (as I have found out all too quickly). We really need to stop being so hard on ourselves.
Anyway my list of the ten best things about holidays:
- Eating fresh fish and chips
- Being anonymous
- You can’t get an internet connection
- It doesn’t matter what the weather is – you can relax whatever happens
- Reading the papers – from front to back over more than one day
- Going out for breakfast
- Walking along the beach
- Slowing down – literally !!!!
- Going to bed late
- 10. Not having to clean the house
By the way – am still bald !!!!!
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 19, 2012 § 3 Comments
I noticed that around this time, this ‘new’ rather poor substitute was showing a funny rash on my upper torso, face and hands and then finally gave up the ghost around last April.
Im willing to offer a reward of a bag of chips and I’m negotiable on the fish, as long as the body is returned in good condition without any ‘changes’ or additional ‘bits’
You can have this rubbish one in return too, or I’ll arrange for it to be picked up and dumped in the nearest recycling place.
Please, I need the old one back, this one is REALLY getting on my nerves now.
Blooming ‘eck, that plate of fish and chips is making me hungry!
September 18, 2012 § 7 Comments
I’m off to hospital tomorrow to see my dermatologist and neurologist (two for the price of one with dermatomyositis). During the discussions about where I’m at, I need to talk about using IVIG (intravenous immunoglobulin) as an alternative to methotrexate. This was brought up with me last week during my stay in hospital as I’m having quite a few side effects from the steroids and methotrexate and I suppose, they are hoping that IVIG will be a quicker and more effective control for the disease.
But…I just feel a but ‘funny’ about the whole thing. I think it might be a combination of factors, one of which being, that each bottle of immunoglobulin is made from the antibodies of 20,000 people. Now…I don’t know about you, but that sort of freaks me out. The thought of 20,000 other persons, ‘little bits’, floating about inside me feels just weird. Rationally, I know I’m being silly. Im a trained scientist for gods’* sake! But it feels weird, I’m telling you: A little bit yeurgh.
Then there’s that damned cannula. Please no more needles and cannulas!
Last week when they took that awful thing out, I bleed for ages, all over the place. My trousers were covered in blood.
Oh, but funny story. I had put those bloody trousers in my suitcase to come home and when I got back and opened the suitcase, the dog immediately jumped in and went into a state of crazed madness dragging the blood stained trousers out of the bag, shaking them and trying to lick the blood off: You’ve got to love dogs for their carefree attitude towards personal cleanliness.
Since taking my weekly Methotrexate on Sunday evening, I have been quite poorly. Nauseated, diarrhoea, weakness and extreme tiredness, headaches and any pain seems to be amplified. IVIG doesn’t come without side effects and they seem to be similar to those caused by methotrexate. I suppose the difference is that the treatment with IVIG is over a shorter period. If I stick with methotrexate we are talking at least another 2 years of taking the drug.
So, I am left with the question, IVIG or not IVIG?
I’ll let you know after tomorrows meeting…
* I purposely have used a small g and the apostrophe in this place, so as not to offend christians and to take into account the fact that some religions have multiple gods.