January 19, 2013 § 10 Comments
If you have been reading this blog, you’ll know I’ve got a bit of a gammy leg.
My neurologist said he didn’t know about legs so I needed to see a rheumatologist – so my GP had to set up an appointment and it took a few weeks (the wonders of the NHS). Yesterday I saw a rhuematologist at the ‘Freemans hospital’ in Newcasle upon Tyne.
In case you don’t know, my gammy leg swells up both in the front and the back of the knee and into the thigh. The back is most likely a Bakers Cyst. But the front, the doctor isn’t sure if it’s an independent problem, or connected to the cyst. The Bakers cyst isn’t that big a deal, to be honest, it’s stiff more than sore, but the front swelling, well that’s another thing altogether and affects my muscle above the knee right up the length of the thigh and that really hurts! All I’ll say is that analgesics don’t even touch it, but heat packs are great, they sooth it, thank god for heat packs.
The rheumatologist did an examination of my legs and came to the conclusion that something wasn’t right with my knee, but that she had never seen this in dermatomyositis before – she’s one of the north of England specialists in the disease, so I take her word for it. So, she offered me an MRI, or treatment and then an MRI if treatment didn’t work. I took the latter as I really wanted/hoped for relief. The ‘treatment’ involved inserting a rather large needle into my knee and injecting steroids in. It wasn’t too bad because my knee was anaesthetised (bit like getting a filing at the dentist).
I came home and within hours my knee had swollen up and the bakers cyst appeared (it sort of ‘pops’ out) and my leg was extremely painful. I had to resort to the heat packs again. I called the doctor and she said it was most likely a reaction to the steroids and it would settle down, which Im pleased to say, it has.
SO, the point of his post is really just to give you an update on the whole gammy leg episode and where I am at with it. To tell the truth, the whole thing depresses me, it stops me from building up my strength – if I do anything much, I end up with a very painful leg that I have to keep off for days. Dermatomyositis is an insidious disease that relentlessly attacks not just your muscles but your very being. I’ve not given up though, Im still fighting it and I’m determined to win. Fingers crossed this treatment works, then its onwards and upwards, no more gammy leg tales…
Oh and before I go, for your delight, here’s another ‘leg’ I found in the field next to our house (not sure who had been chomping on it):
December 31, 2012 § 8 Comments
Well it has been a bit of an odd year. A year out of perspective, one that really, I’d rather hadn’t happened. But it has and I need to get on with my life and move into the New Year and take advantage of the freshness of that change.
I was talking to a friend this weekend and she said to me, “but Susie, when people have life changing events happen to them, like being told they’ve got an awful illness, they change their perspective on life and start to make changes, do things they’ve always wanted to, you need to do that too”.
I just didn’t know what to say, other than, I just want normal back. Yes, I did go through a period where I had an almost religious reaction to my diagnosis and felt I should do something ‘worthwhile’, but I quickly moved into the next phases of denial and depression. Maybe that’s a failing in me, but I can’t force myself. Yes of course I’d love to travel and achieve some professional goals and loose weight and spend more time with friends and all the usual stuff you want to do in a new year. But, what I really want, is normality, to be able to go for a proper long walk without fear of hurting myself so badly, that I’ll be unable to walk for a week, to not feel dreadful all the time and tired and sore. If I can achieve this in 2013 I’d be very happy with that.
To all the blog readers, sick and well, hope your 2013 is everything you want and hope for.
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 17, 2012 § 5 Comments
Yesterday I went to this fund raising lunch to support research into depression. The guest speaker was a relatively prominent member of a national football code. His talk was interesting, a good speaker and personable enough but to be honest the content was pretty shallow. While I have no doubt he suffered from a depressive episode his recovery sounded as simple as waking up one day, deciding not to be depressed, going for a jog around the block, changing his diet and getting back on track with his professional football career. Thankfully for him, he only had to see a psychologist 4 or 5 times and he didn’t require any medication. Of course the audience ( most of it) found his talk ‘inspiring’ and his honesty in ‘outing’ his illness similarly inspirational.
Perhaps I am a sceptic but having suffered multiple episodes of depression throughout my life (including years of medication), two incidents of anorexia nervosa (including a three month hospitalisation), domestic violence/abuse at the hands of a partner, several failed relationships, at least two failed businesses, significant financial loss, cancer and a daughter who herself suffers from mental illness (depression and anxiety) – I couldn’t help but think that neither he nor the audience had any real insight into the reality of depression and mental illness more generally. I know that people look to celebrities as sort of role models including as evidence of strength against adversity, but there are so many more of us that really experience very serious life challenges and who manage to get through them pretty much by ourselves and with our families, whose efforts go unnoticed. This is not to say that I think we all need this kind of celebrity attention, but that there are many of us who should simply give ourselves more credit for facing and overcoming the challenges we face – sometimes on a daily basis. I say this because I know there are many people who read this blog who deserve that acknowledgment and who should be proud of the simple achievements they have made. You guys are the real celebrities. Cheers 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!
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 21, 2012 § 10 Comments
Every year, for a few years now, I’ve made a piece of jewellery for an auction held by a charity called Lifespan.
Lifespan is a small Northumberland based charity, that helps out sufferers of serious illnesses and their families, cope with the effects of the illness on their life.
The help they offer is free of charge and includes, sitting services, counselling and various complementary therapies. They do sterling work.
So the irony is, that I find myself with one of the diseases that they offer help with. Funny isn’t it how these things pan out.
This year, I’ve donated two necklaces (one of which is shown in the mage above). I haven’t mentioned that I make jewellery – well I haven’t made any for a while as my hands are very shaky and shaky hands cannot make jewellery. Fortunately, I knew the auction was happening, so I made these a while back when I was still well enough.
The Lifespan auction is being held at a gallery in Newcastle upon Tyne called the Biscuit Factory on the 4th of October. I usually go each year and always buy something, as they have utterly wonderful pieces for auction, often by very famous artists, like Tracey Emin, Anthony Gormley and Beryl Cook (yes I feel quite humbled that my work is in amongst those). This year I may not make it, I’ll see how I am. At least I can give them something to auction. Organisations like this are so important. Serious illness affects not just the person who has the disease, but their family as well. I’ve also realised that being ill, for so long, with such a scary illness, affects your mind as well as your body. Having people who understand that and can offer advise and practical help is so important.
Fingers crossed Lifespan get a good crowd and make a lot of money at the auction.