Give it up

When you are first diagnosed with a chronic illness it seems as though you are constantly having to give things up. Good things. Fun things. Chronic illnesses don’t tend to be a death sentence but they often appear to be a boredom sentence. It can take years of living with the disease to work out that you don’t need to live like a monk after all and I have often wished that doctors would try harder to get this message across.

For instance, when I was at university I was diagnosed with irritable bowel syndrome (the first of my chronic ailments). My GP told me to give up alcohol (as a hard partying, hard drinking student, that was bad enough), plus coffee, spicy food, tomato skin and dairy. Just like that. He did say there might be other irritants but didn’t advise how to identify them. Now maybe I was just unlucky. I’m sure other doctors out there have the sense to advise a detox diet followed by reintroducing possible irritants one at a time. I worked it out for myself, but with no advice to follow I did rather a bad job of it. I didn’t keep a food diary, didn’t try to add small amounts of foods and then larger amounts. I just cut things out and then started eating them again and guessed at whether my IBS pains were being caused by a food item or the stress of university.

After many years of trial and error I have now worked out that I didn’t need to cut anything out entirely, I just need to limit my intake of certain things, particularly stress. And the most effective change to my life that reduced stress? Being diagnosed with lupus. Odd how life works, huh?

Of course, lupus brought its own limitations on fun. Never having any energy means rarely doing anything on a week night. Near-constant headaches, joint pains and brain fog mean I often feel antisocial and struggle to make conversation with people I don’t know very well. Avoiding the sun in summer puts me in the opposite mindset of everyone else. I often have to cancel plans, which close friends and family accept (and I love them for that) but it makes it hard to go to gigs or the theatre, stuff that needs to be booked months in advance.

So when I was first ill with lupus, I stopped doing everything, near enough. I became good friends with the TV and the DVD collection. I took everything more slowly, moving house so that I could walk to work and the doctor and the train station. I was bored a lot of the time, but I wasn’t stressed.

Until, that is, I got fed up with being bored. I hadn’t expected to ever be one of those people whose life is work, TV, bed, but that’s who I’d become. I didn’t go out like I’d used to, didn’t take any of the evening classes I’d planned to, even gave up writing, my favourite hobby since I was six years old. Something had to give.

My first saving grace was photography, as I’ve talked about here before. I’d had a camera almost my whole life but it wasn’t until Tim bought us a good digital camera that I really discovered the creative possibilities and found that I wanted to learn all about F numbers and exposure settings and all sorts of things. Here was a hobby that I could do as much or as little of as my diseases allowed me to. It got me out of the house and going for walks. It gave me something to talk to new people about, when the brain fog allowed.

My second saviour? Really good food. I have always loved my food, even if as a vegetarian with IBS I seem like a horribly picky eater. But I discovered that I didn’t mind cutting back on foods that I love, like cheese and ice cream, if I found the absolute best form of that food. I mean, no-one gorges themselves on white truffles or caviar; you’re meant to have very small amounts of it and savour it for days afterwards. That’s how I treat coffee, or chocolate, or alcohol (most of the time). I spread these pleasures out over my week, so it doesn’t feel as though I’m missing out at all.

I’m sure there are people who would look at my life and call it dull. I don’t get drunk (often), or stay up late, or join the latest extracurricular fad. And I do get frustrated with it all sometimes, but I have learned to take life slowly and appreciate the small things and I suspect that makes me happier with my lot than many a “healthy” person out there.

15 thoughts on “Give it up

  1. Leeswammes (Judith) September 12, 2011 at 7:29 pm

    It’s good that you’ve found a better way to deal with your illnesses but what a pity that it had to take so long for you to figure out! You’d think a doctor could help you at least some of the way!

    Are there patient groups that you can join where experiences are shared? That would be another way to find information. Although it seems you’ve got it all under control now!

  2. Nose in a book September 12, 2011 at 9:22 pm

    Judith Figuring out which internet sites are useful and which aren’t was a helpful step 🙂 I went along to a lupus patient group once but didn’t find it particularly helpful. They were all old!

  3. Ann September 12, 2011 at 9:48 pm

    Have to say Kate – I think you’re pretty amazing. And I look forward to seeing what life brings you over the next few years – am proud to call you a friend!

  4. Nose in a book September 12, 2011 at 9:51 pm

    Ann ! I don’t know how to respond to such a lovely comment, but thank you! You’re a pretty fab friend yourself 🙂

  5. Amy September 13, 2011 at 12:48 am

    I’m glad to hear you’ve found a way of coping. I have some stomach / digestion issues that are as of yet really undiagnosed. I’ve gone through a number of treatments but still have issues. Like you I find small bits of the best form of some things – like ice cream – makes it OK to go without for the rest of the time.

    Also, you do not sound dull at all, you rather sound fun 🙂

  6. Nose in a book September 13, 2011 at 7:26 am

    Amy Hope you get a diagnosis soon. And thank you!

  7. Uniflame September 13, 2011 at 2:37 pm

    I hear you. I don’t have lupus, but being chronically fatigued sets about the same limits. Including the brain fog because of my ADHD. I always encourage people to really live their lives the way it is best for them. Even though people can be judgemental. I have to fight a lot for being able to live my life the way I want it to be. And reading posts like yours make my realise I am not the only one. Stay strong 🙂

  8. Nose in a book September 13, 2011 at 5:22 pm

    Uniflame I think fatigue and brain fog are common to quite a few chronic conditions and they are just as sucky for us all! Sorry to hear people around you haven’t been understanding. Keep up the fight! x

  9. Eva September 17, 2011 at 7:23 am

    As someone who’s had chronic illness issues since I was 15, I totally understand this! My senior year of college, when everyone else was having fun, I had to have a strict 10 pm bedtime every damn night if I wanted to be able to function. So frustrating! Blogging has been a great boredom fighter for me: I can get to know people, make friendships, etc. and never worry about having to cancel ten times in a row because I’m having flare-ups and can’t leave the house. That, and books, and now having a dog! 😉 I’ve gotten in photography quite recently as a way of journalling now that it hurts me to type or write very much: I really love it as a substitute.

    Anyway, like you, I think learning to be content with a quiet life has actually brought me great happiness: I appreciate all the little things so much more!

  10. Nose in a book September 17, 2011 at 12:35 pm

    Eva You’re right, blogging is of course another avenue that has really helped me cope. I’m glad that you have found contentment; so many people don’t.

  11. Eva September 17, 2011 at 8:27 pm

    I’m glad too! It took a lot of work, but it was all worth it. 🙂

  12. Barbara September 28, 2011 at 1:56 pm

    I understand. I have arthritis and COPD so I frequently have to rest either because of pain or being breathless. Fatigue is the hardest issue to cope with because it’s so maddening, and people don’t really understand. COPD is one of the illnesses too that everything figures you asked for because you must have smoked. I quit in 1968, but was always around second-hand smoke at work and practically anywhere else. Finally, we heated with a woodstove for years that periodically leaked smoke due to downdrafts. Lupus is terribly difficult to cope with and I admire you for trying to find ways to enjoy life. Blogging is one of my life changing activities.

  13. Nose in a book September 28, 2011 at 5:01 pm

    Barbara Yes, fatigue is so hard both to get others to understand and also to take seriously yourself. Sorry to hear people make assumptions about your illness; that’s grossly unfair.

  14. Kathy D. September 30, 2011 at 6:30 am

    You’re doing great! That library/dining room/entry to the garden is fantastic. It would brighten any serious reader’s life.

    I have library and garden envy.

    Living with a chronic disease is hard, but in this age of Internet communications, one is less isolated. Lots of great blots to read and comment.

    The other thing is books, reading good books, discussing them online and sharing them is a hobby — no, a way of life for me.

    I can’t run around, have exhaustion and other issues, so really good books are important to me and people with whom to discuss them, and then share them.

    So many people in so many areas of the world don’t have this luxury. So I consider myself lucky to be able to have this for myself.

  15. Nose in a book September 30, 2011 at 7:26 am

    Kathy D You’re right, having time to read and an easy supply of books is a luxury and one I would desperately miss! We are lucky.

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