14/05/2015

LEARNING TO LIVE WITH CHRONIC ILLNESS

I've been living with two chronic illnesses (Fibromyalgia and Joint Hypermobility Syndrome) for a little over four years now and after several failed treatments and countless medicines that didn't work for me, I've been left totally on my own to learn how to live with a ridiculous amount of pain, stiffness, exhaustion and a whole load of other symptoms which affect my life every single day. It was about two years after being diagnosed that I realised my life was going to have to change quite drastically and I wouldn't ever be 'healthy' again. It took me quite a while to truly accept that and adjust my life accordingly, but I feel like I've reached a pretty good place now and I've learnt what I need to do to keep these illnesses as 'manageable' as they can be...

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(1) Pacing, Prioritising & Accepting Your Limitations: Pacing is something that is very important with chronic illness, but it's incredibly challenging to get your head around. Modern life is supposed to be busy busy busy with lots of different commitments and obligations, so accepting that you're limited in what you can achieve on a day to day basis and that you have to spend a lot of your time resting to compensate for the energy you do use is pretty bloody difficult. When you have limited energy you have to consider what actually needs to be done against what you want to do, and unfortunately you usually only have enough energy for what is needed. You have to learn to limit yourself so that you don't push your body too hard and cause yourself a flare up where your symptoms become unbearable and you're left unable to do anything. For me this has meant that I can only manage to work part time and because I also run my blog alongside of working I've had to sacrifice my social life. I'm lucky if I'm able to do 1 or 2 social things a month now and I'm not able to spend as much time blogging as I'd like to because I have to spend a lot of my free time resting.

(2) Accepting That You May Lose A Few People Along The Way: Unfortunately all of these sacrifices and having a very restricted social life means that you may lose a few friendships because as much as you try to explain to people why you're not feeling well enough to meet up, very often they just don't understand it. Feeling like you're letting people down all the time absolutely sucks, but you have to learn to put yourself first. Me and my fiancé often end up having our date nights at home with a takeaway pizza and a film because I can't manage to go out and I don't get to spend as much time with my family as I'd like to. I hate that I don't feel like a 23 year old and I still find myself wishing I was out doing exciting things, but it just isn't possible and I try to accept that rather than wasting my days feeling resentful about it.

(3) Adjusting Your Life Plans: I was a couple of months into my degree when I was diagnosed and whilst I managed to complete my degree with 2:1 honours, I can't help but feel like everything which I worked so hard for throughout my education has been stolen from me. I used to dream of a career in London where I would be pushing myself every day and I also wanted to travel a lot, but being ill has resulted in me only being able to work part time in a small shop where I get paid minimum wage so those dreams feel unattainable now. I can't really explain just how difficult it is to realise and accept that you physically can't achieve the things you dream of, but you do find ways of gaining happiness through other things; my blog has been my life line and I have other hobbies like yoga, reading and baking which I find very rewarding too :) 

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(4) Finding Things That Help You (Particularly When Medicines Don't): I strongly believe that to cope with chronic illness you have to treat yourself; it's so important to find those things (no matter what they are) that bring a smile to your face and make you feel just a little bit better, because living with a chronic illness is very mentally challenging and you don't want to fall into a depressive way of thinking (I've been there and it's very difficult to bring yourself out of). I find bubble baths a very relaxing and soothing way to switch off from the pain and I also love pampering myself with lovely lotions and potions. I use make-up and pretty clothes as a way of making me feel like I can get through the day no matter how awful I'm feeling and I also like to treat myself to some chocolate every now and again (I'm trying to cut down on this at the moment as I'd started comfort eating a little too much, but sweet treats are definitely vital when you're feeling so unwell all the time!)

(5) Realising That There Isn't A Cure: People often say to me that medicine is developing all the time and there might be a cure/treatment discovered one day, and whilst I know that's true, it doesn't help me at the moment with getting through each day, so I try not to get my hopes up. If I had a pound for every time someone said to me 'have you tried this or have you tried that' (usually expensive vitamins or exercise routines that I wouldn't have a hope of doing without causing myself a hell of a lot of pain) I'd be a very rich lady - it's not that I don't appreciate people trying to help because I truly do, but it's so difficult trying to get your own head around the fact that there's no cure or specific treatment designed to help these illnesses, so having to constantly make other people understand that too gets seriously exhausting. I've spoken to enough people with the same illnesses and done enough research to know that there is no cure and one of the healthiest decisions I've ever made is to accept that rather than clinging onto hope. Thinking that one day you're going to be completely healthy again leads to huge disappointment when it doesn't happen and it also prevents you from taking positive steps to make your life good now. I don't mean to be a negative nelly, but Doctors don't even really know what causes these illnesses, so they currently don't have a hope in hell of curing them. 

When I'm having a particularly bad day and I feel so resentful and absolutely furious that this is my life that I just want to scream, I try to get some fresh air in my lungs and remind myself 'it's just a bad day, it's not a bad life' :)

Love Holly x

6 comments:

  1. Great post and awareness for chronic illness, Holly.
    I can relate to so much of what you are saying. I really admire you for completing your degree, even if you don't feel like you are gaining much right now from all of your hard work. I truly hope your time will come with this aspect in life and you will be able to reach your working goals and aspirations. We are often to hard on ourselves when we live with chronic illness and actually need to give ourselves a pat on the back more often for the small things we even manage to achieve despite all of our pain.
    Wishing you well,
    Nancy x

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    1. Thank you so much for your lovely comment Naney, it really meant a lot <3
      It's always so nice to talk to people who understand and thank you for your kind words about my degree, you really boosted me up. I completely agree about us spoonies needing to give ourselves more of a pat on the back, I'm really guilty for focusing on what I haven't been able to achieve rather than what I have and it's not a good way to live.
      Lots of love and hugs xxx

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  2. This is an absolutely brilliant post, I feel I could have wrote it myself as I really do feel the same way! Chocolate certainly helps, I treat myself too much though and then moan I feel disgusting after haha- girl logic

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    1. Thank you so much Lauren, I'm so pleased you enjoyed it and it means so much to have people who understand <3 Haha i'm totally with you on that girl logic, chocolate is just the best though! xxx

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  3. Brilliant post, Holly. Every point resonated with me so much- adjusting to life with chronic illness is extremely challenging. I'm so glad that on the whole you're feeling in a better place now in spite of what you have to endure everyday. You're a very strong lady and I think you should be so proud of yourself for reaching a place where you're able to reflect on what has helped you and share it with others. LOADS of love xxx

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    1. Thank you so much Faye <3 It means a lot when people understand as I worry I'm just moaning sometimes. Your kind words mean the world, you're such a lovely lady :) lots of love and hugs xxx

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