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.
September 24, 2012 § 10 Comments
As I said in a previous post, I’m following a diet that will hopefully boost my immune system and help me fight dermatomyo – shite -is (AKA dermatomyositis).
The problems with following this diet, whilst suffering from this illness, includes the fact that sometimes you literally do not have the energy or strength to cook. My leg hurts often and I am very tired a lot of the time, so sometimes it’s hard to stand for extended periods to cook – and trust me, getting Steve (bless his cottons) to cook for me, is NOT a good idea…
So I rely on easy meals and often ready made meals. When I say ready made meals, I’m here talking about very high quality ones that tend to cost a lot. Therein lies another problem with following a good autoimmune diet whilst very ill – it’s expensive.
However, here’s a simple meal I made, as an example of what I try to eat (I must admit that sometimes you just have to have a plate of gluten free fish fingers and chips).
Take your salmon fillet and add a butter slice and some herbs of your choice – no salt!
Wrap it in foil and cook in an oven for about 20 minutes. You could pan sear it, but it makes a right mess in the pan and remember we’re trying to reduce time standing.
Then use a good quality stir fry mix, or salad, to finish off your meal:
I use olive oil to fry with, it’s apparently good for handling cholesterol and has all sorts of positive benefits, including preventing colon cancer and reducing blood pressure (things that we DM’ers are at an increased risk of).
When finished, stick ’em both on a plate and eat heartily (unless you have post methotrexate nausea in which case, just try to eat a little bit).
A simple meal, but by no means cheap. Maybe you know of a good, easy to prepare and cheaper meal?
Thank you Mr or Mrs Salmon, I really appreciate it
UPDATE: An excellent presentation by the USA Myositis Association, on diet can be seen here: http://www.myositis.org/storage/documents/2012_AC_Presentations/TMA-_lantner.pdf
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.
September 10, 2012 § 8 Comments
Blog readers, this is an account of a trek, nearly beyond human endurance. A trek that tests a human to the limits of their capabilities (well this human anyway). OK I may be exaggerating, a bit 😉
The Trek Begins: There and Back Again…
Gammy leg in tow, I began my trip, from my house to the very edges of my road. I had to navigate through small children, screaming as they saw this hideous half pig (from my steroid moonface) half human, emerge, hobbling along like a modern, female, version of Quasimodo (the bells, the bells!)
Here, blog readers are excerpts from that trip, recorded for your delectation and delight (beware the Geordie accent, not quite as pronounced as Cheryl Cole but almost).
Hope these play on non Mac OS’s:
And back again…
A Trek in Pictures
Here I am starting out on the epic adventure – aka the top of my road, tis no ordinary road, this is a lovely place that I live in:
Halfway there (puff, pant, tired, sore)
And finally the end is in sight – phew!
I made it back, intact, leg a bit sore but that’s OK. I just have to keep it up and that’s hard when your leg has a tendency to swell up and give you pain like you’ve not experienced since childbirth. Thank god for heat packs.
UPDATE: Since this epic trek, my leg has actually been much improved and I’ve even done a little bit of gardening…dare I say, I may be at a turning point, oh how I hope…
September 3, 2012 § 9 Comments
So, i’ve got this sore leg. It’s my left leg as it happens. It swells up around the knee if i use it too much, by too much we’re talking here of a short (very short) walk. It hurts and it twitches. The twitches don’t hurt, they’re just annoying, like the twitch you get in your eye when you’re really tired, except this is all over my leg.
I went out the other day to the shops, first outing on my own, that far, for 3 months – I needed to get some painkillers and heat packs, for the leg. Of course the little outing was an ironic one as it made my leg hurt more. But it’s important that I get out and try to build my stamina and become a little more normal.
You know when you’re in a crowd and there’s an old person, or a person with a small child in front of you and they’re walking really slowly and you just want to scream at them, “out of my way beyatch!”?
Well…I was that person today. I was the little old granny, or mother with a toddler, getting in your way. I was acutely aware of being slow and annoying, but I couldn’t do anything about it.
So I’ll say on behalf of all those annoyingly slow people who get in your way, sorry, you’ll just have to be kind and grin and bear it – you never know when it might be you, dragging your gammy leg along, with a queue of people behind you.
Oh and just to emphasise the pathetic nature of my walking capabilities at present. I was going into hospital recently for a scan and I was hobbling along and a man, easily in his 70’s, walking with a stick, overtook me, sigh.
UPDATE: Ive just had a letter though from the hospital (about the above mentioned bone density scan). I have Osteopenia of the hips – more on what that is in another post as Im in shock, although I don’t know why as it’s a complication of the steroids.
August 28, 2012 § 2 Comments
The NHS are wonderful in many ways, but holistic advise isn’t really forthcoming for a lot of diseases, this being one of them. If you have coeliac and often for cancer sufferers, you will get offered the advise of a dietician, but in this case, it wasn’t seen as connected.
It seems that the connection between autoimmune disease and diet is highly contentious in fact, I think more so in the UK than in the USA, but I’ll explore this in another post.
So, in the end I paid for a private consultation with a dietician – fortunate for me that I could afford to do this, not everyone can. It cost me £40 per session and I had 2 sessions, by Sykpe, as the dietician is based in London. Isn’t Skype video a wonderful thing.
Fleur, the dietician, wanted me to eat meat to help with my muscle replacement after the effects of dermatomyositis: I just can’t. I became a vegetarian as a quiet protest against the mistreatment of animals in factory farms, not for health reasons, so I just couldn’t bring myself to change that philosophy. After much debate, I agreed to eat fish. So with that in mind, she gave me this advise:
1. Eat eggs and fish every day
2. Eat root vegetables as much as possible, for example beetroot, carrots, parsnips, etc.
3. Eat green leafy vegetables as much as possible
4. Cut out Gluten (I already have, that’s another story)
5. Cut out dairy and lactose (see later)
6. Reduce my eating of grains to a minimum (I admit I like to odd slice of gluten free bread…sorry Fleur!)
7. Eat nuts like walnuts
8. Reduce sugars like sucrose and fructose as much as possible
She also wanted me to take a supplement called Lactoferrin which is found in mothers milk and helps to boost the immune system.
I also have to take high dose vitamin D, prescribed through my doctor, as my vitamin D levels are very low, as well as the usual Natecal (calcium and vitamin D tablets you take to counter the steroid affects on your bones).
I’ve also cut out caffeine as much as possible and alcohol (Waaaaaaaaa!!!!!!)
So how did I get on, 2 months down the line…
Well as Im sure a lot of you know, making dietary changes, especially ones that involve eating healthy stuff is never easy. I did however, give it a go and continue to mostly follow Fleur’s mantra.
I do eat high cocoa solid chocolate and have the odd treat of a small Green and Blacks dark chocolate ice cream, mmmmm chocolate ice cream mmmmmm.
The only one I’m really struggling with is cutting out dairy, because every morning I have a really delicious breakfast which I can’t bear to give up. My breakfast, shown below, is gluten free muesli (well actually a mix of two different ones) with milk (not much though!) and some organic coconut yogurt, with berries of several types on the top…mmm…mmm…mmm how can i give that up!!!
I’m actually pretty good at controlling my diet but I have slipped a little bit with the odd slice of gluten free bread – I find it helps with the nausea caused by the methotrexate.
So has it worked?
Well it’s early days: I feel very ill still. But then maybe if I was eating lots of gluten and sugary foods, etc. I’d be a lot worse. I won’t take the risk of exacerbating this illness and so I will persevere, but with the odd fall off the wagon.
How do you do a comparison for an experiment like this? I don’t have a control group to check results against. All I can do is assume this is the best way forward and stick with it. The alternative would be to start eating badly and see what happens – no thanks!
In the end I can say I eat pretty well, but I am finding this diet expensive. I am in a position where I can afford it, but others would struggle.
I’ll write some more posts on diet and feeding because there are considerations when you have this disease that may not be obvious to dieticians.
I found some lactose fee milk…woohoooooo, so I’m using that instead of the real stuff, it’s fine, it tastes the same.