Friday, 15 February 2013

Never gonna give you up, never gonna..... shush Hannah.

Believe me, nobody would appreciate my bursting into song!

Whilst rambling away on Tumblr last night I came upon the inspiration for this post - what have people had to give up as a result of their illness? As it's something that seems to differ wildly person to person, I thought it would make an interesting topic for a post.

I had to sit and think surprisingly hard about this - changes become part of your "new normal" after a time so it's hard to remember them!

  • Alcohol - no big loss to me as I was never a big drinker, but I gave it up out of choice when I started having bowel issues (it seemed sensible), and then on being diagnosed with IC and placed on Amitriptyline I then had two very good reasons to make it a "no" permanently. The only time I find this to be an issue is on nights out - I definitely think there's a point where everyone else is too drunk for you to be sober and I end up quietly taking my leave!

  • Citrus fruit and citrus fruit juice - citric acid is a huge irritant for the IC bladder, so I made this change pretty quickly. This combined with the amitriptyline and my efforts to drink less tea (I don't like coffee, but I am a tea monster!) seem to have to calmed it down to a manageable level. I don't like apple juice so struggled to find a viable option to scratch my fruit juice itch for a while - Morrisons eventually came to the rescue in the shape of their fresh red grape and pomegranate juice - it's lovely!

  • Diet - I haven't found many specific things which affect me (except onions, but the dislike is mutual) however I've found I don't enjoy food the way I used to, and that's a little upsetting. I think it's down to the fact that I always have in the back of my head the thought of how my bowel may behave afterwards, and there's the bloating and pain as well. However, whilst I never had a particularly unhealthy diet to begin with it has given me the incentive to really clean it up. I cook with meat less than I did before, substituting it with vegetables where I can and this seems to help. Also, it's pretty tasty! 

  • Horse riding - strictly speaking I gave this up voluntarily to learn to drive when I was 18, as money would only stretch so far. I had always hoped to go back to it though as I love horses and after riding for twelve years I'd achieved a pretty good standard, but I've had to give this dream up. There's just no way my joints would stand the pressure and high impact nature of the sport any longer - also, one fall could set me back weeks of recovery time. As much as I've been tempted to throw caution to the wind on occasion, I'm sure we've all found that some things are just not worth the risk.

  • Gigs - I haven't given this up entirely, but I've had to become much more picky in terms of what I go to and how often, as well as having to carefully consider the travel aspect. I find as long as I'm careful and don't end up right at the front where all the pushing tends to happen I'm good for a couple every now and again as long as they're evenly spaced with plenty of recovery time inbetween. We're off down to London next month to see my favourite band, power metallers Serenity, and this will be the first test for a while. 2013 also marks my second attempt to attend a festival since falling ill. What is this madness, I hear you say? We're in a hotel, know a good stall to eat at and having had the disastrous first attempt (last year) we now know what not to do! I'm hopeful this year will be much better. I've been attending Bloodstock Open Air since I was 18 and it would be a shame to lose what is now an annual tradition.

  • Exercise - whilst there's very little that's entirely specific, this bears a mention. I used to walk everywhere I possibly could and living on the edge of the Peak District when I lived with my Dad meant I had a great love of walking for pleasure. I struggle to do this now as my knees and hips don't respond well to the pressure of uneven ground, and I tire very easily much to my frustration. I have found Pilates to be a good alternative - not only can you do it inside in the warmth and comfort of your own home, but it's low impact and also good for flexibility and strength. I'll go into more detail with this in another post. Now I've moved to York I do intend to re-take up pole dancing - it sounds a bad idea on the face of it, but I didn't find it painful for the six months or so I engaged in it before, and it is fabulous for strength building. It's an often misunderstood and yet entirely valid form of exercise - I digress, and I sense another future post in the offing there!

  • Socialising - I've said over on my Dramatis Personae page that I count myself fortunate in being able to maintain a social life - the main difference for me is having to plan. Two nights or days in a row doing something is now no longer an option, and I have to weigh up how close events fall to one another quite carefully before making any decisions on attendance. There will of course always be times when two important things fall close together and I will need to just grit my teeth and get on with it, but I'm hoping being sensible in the mean time will hopefully stop those occasions from being too damaging. I'm hugely lucky in having a fantastic bunch of friends who are very understanding if I have to cancel at the last minute, or unfortunately have to decline based on proximity to something else so thankfully nobody gets offended. 

What has everybody else had to give up? I'd love to hear about anyone else's experiences.


  1. I'm with you on all of those except citrus juice! (As that doesn't affect me.) My diet is normally not very restricted but sometimes I have to go on a super strict diet and basically only eat white things... I'm worried I might have to give up my job as well if I get flare-ups and have to have operations and stuff which is looking likely. X

  2. Things I've had to give up, hmm?
    -Alcohol's the obvious one, as it doesn't mix with cocodamol/fluoxetine/nortriptyline.
    -Archery, Judo and LARP combat are the exercise type things I've had to give up. When you can't string your own bow anymore, and when being hit by latex weapons/floors begins to hurt all the time, none of them are a good idea. Even if I started Judo with a sensei and small group who understood my limitations (there are a few I've inquired of), I would never be able to grade due to being on a steroid asthma inhaler.
    - Socialising. As you say, it requires much planning and it always comes with a price. Weekly Karaoke has become Karaoke when I can drag myself out, and never until 3am anymore.
    - My university course. I've been trying for 5 years now to complete an undergraduate MPhys Physics course. After losing a year to Depression, and 2 years to diagnosing the Fibromyalgia and Hypermobility Syndrome with a side order of Pes Planus Deformities, my final chance was this year and I have had to stand aside. Boy, did that realisation give me a beating for a few months.

    Then there's all the little things affected like how I can't cook a meal/wash up/shower/do the shopping etc. without laying myself out for hours. Makes life rather difficult, and a pain for my oh so understanding fiancé. But we get by.

  3. Check out mine here:

  4. Lauren, I really want to give you a very gentle hug for your situation :( I'm glad you're still doing OK and that your fiance is understanding - keep your chin up :)

    Sophie - let's hope you can keep going with the job, hugs and spoons m'dear xx