30 Things You May Not Know About My Invisible Illness

3 Sep
Photo by Jess B.

Smile, My Guiding Light Through My Invisible Illness.Photo by Jess B.

Invisible Illness Week starts on 9th September 2013.

To raise awareness of invisible illnesses everywhere, chronically ill bloggers are completing this meme designed by Lisa Copen founder of Rest Ministries and National Invisible Chronic Illness Awareness Week: 30 things you may not know about their invisible illness.

(As an aside, is it just me who didn’t know what a meme was?! We’ll blame brain fog for that one…For anyone else out there like me who isn’t already in the know (!) a meme is: an idea that is passed from person to person within a culture (thank you Wikipedia for clearing that up for me!)

Here’s my answers to the meme: 30 things you may not know about my invisible illness.

1. The illness I live with is: ME/CFS, POTS and IBS.

2. I was diagnosed with it in the year: ME/CFS 2011, POTS 2013 and IBS 2005

3. But I had symptoms since: 2004

4. The biggest adjustment I’ve had to make is: everything in my life has changed but the biggest adjustment is letting others do things for me and not feeling guilty about it and letting go of control over things and my independence. Oh and stopping doing something before I crash.

5. Most people assume: I obviously don’t feel as bad as I do because I don’t look ill ‘you look well…’ I’m very good at hiding things and getting on with things and make up hides a multitude of sins as they say (not that I have the energy to wear make up very often any more).

6. The hardest part about mornings are: the pain and aching in my muscles and joints, especially lower legs and arms. It’s always worse in the mornings until I get going. Also waking up feeling totally unrefreshed and as tired as you did when you went to bed is pretty hard too.

7. My favorite medical TV show is: I don’t like blood, I’m pretty squeamish so I don’t watch medical shows. My favourite TV show…well that’s tough, West Wing, The Good Wife, Nashville, Parenthood, The Newsroom, at the moment I’m watching and loving Friday Night Lights.

8. A gadget I couldn’t live without is: my iPad, it has all my meditations and yoga podcasts on it. It is also light enough for me hold whilst sat on the sofa so I can surf the net without exacerbating symptoms.

9. The hardest part about nights are: night sweats and not being able to fall asleep.

10. Each day I take 22 pills & vitamins (+ as many painkillers as my pain needs to keep it in the realm of bearable, varies each day)

11. Regarding alternative treatments I: have tried a lot of things: acupuncture, reiki, shiatsu massage, yoga (which I love), meditation (which I love), reflexology, homeopathy, herbal drinks..list goes on.

12. If I had to choose between an invisible illness or visible I would choose: invisible, at least that way I can act ‘normal’ and okay when necessary.

13. Regarding working and career: career is on hold, I haven’t worked full time since December 2010 and I haven’t worked at all since September 2011.

14. People would be surprised to know: going out for just an hour leaves me needing to rest for the rest of the day and suffering a spike in symptoms for several days after. This is the real invisible side of my illness, most people don’t see the preparation (doing as little as possible the day of the outing and the day before) or the after effects.

15. The hardest thing to accept about my new reality has been: people’s misunderstanding and ignorance about ME/CFS, that so many people still see this neurological illness as ‘yuppie flu’ and/or all in the head.. it is a neurological illness as defined by the World Health Organisation, it has been described to be as debilitating as late stage HIV Aids and MS and yet there is still stigma attached to it. We do not have the energy to get through our daily lives never mind deal with the stigma.

16. Something I never thought I could do with my illness that I did was: fly to the USA to visit my sister in Philadelphia which I did this April.

17. The commercials about my illness: we don’t really have commercials about ME/CFS or POTS in the UK. The ones about IBS do not portray any of the gory details.

18. Something I really miss doing since I was diagnosed is: so many things it’s hard to choose but cooking, working and (never thought I’d say this) exercising.

19. It was really hard to have to give up: I should probably say my job, but when I gave it up I knew I had to for the sake of my health, it was just too much and I knew that, so it wasn’t actually that hard to give it up even though I really enjoyed it. Giving up my independence and control over things has been really tough and I still struggle with it – being pushed around a shop in a wheelchair having to explain where and what I want to look at rather than just being able to wander over on my own two feet wherever and whenever I want.

20. A new hobby I have taken up since my diagnosis is: yoga, meditation, blogging all I which I really really love and am grateful to my illness for giving me time and the opportunity to experience and love these things.

21. If I could have one day of feeling normal again I would: cook, bake, cook, I miss being able to play in the kitchen! I’d also go out for dinner and drinks with my boyfriend and family, it would be amazing to do these simple things without the torment of feeling exhausted and pain spiking any second. And yes in case you haven’t guessed I love food! I would also practice yoga (a longer and more energetic practice than my current ‘chronically ill’ usual) and to meditate as I think yoga and meditation have a huge role to play in ‘healthy’ daily life and I wouldn’t and won’t be giving these two up when I am well.

22. My illness has taught me: to take time out to rest and relax, to be calmer, that I love meditation and yoga, to slow down and listen to my body, to be more in the moment, to be less perfectionist and obsessive (still got some work to do here!). My illness has really changed me, changed my outlook on life and changed my priorities. I have learnt so much and I am still learning.

23. Want to know a secret? One thing people say that gets under my skin is: ‘you look so well…’ I know you’re trying to be nice but it makes me feel like you think my pain isn’t as bad it is or that I’m making it all up…..(which I categorically confirm I am not and seriously why would anyone choose to feel like this?)

24. But I love it when people: tell me how strong I am (need to hear it from time to time) and when friends and family send surprise cards and packages in the post, that never fails to make me smile because it’s nice to know they’re thinking of me even if they haven’t seen me in a while.

25. My favorite motto, scripture, quote that gets me through tough times is: ‘what doesn’t kill you makes you stronger, what doesn’t kill you makes a fighter’ (this is my ringtone on my phone)

26. When someone is diagnosed I’d like to tell them: you’re not alone, there’s lots of support out there. And most importantly ME/CFS is a real physical illness, do not hide or feel ashamed about your illness (as I did at the beginning) and that there are loads of things you can do to help manage your symptoms, you just need to be open minded and think outside the box and be patient and that stress plays a huge role in this illness.

27. Something that has surprised me about living with an illness is: how many other people are out there going through exactly the same thing. Blogging has been a wonderful eye opener in this regard. Not so much that it has surprised me but having to use a wheelchair makes me realize just how hard being disabled is in our modern world; pavements are not wide enough or not smooth enough, not nearly enough lifts on London Underground etc etc.

28. The nicest thing someone did for me when I wasn’t feeling well was: there have been so many I’m struggling to choose, friends understanding that I need them to visit me, that the visit can’t be as long as we’d like and that I appreciate their effort, my Mum and Dad giving up so much to look after me over the last few years, my boyfriend for sticking by me and living through this with me, my sister for keeping me supplied with DVDs to watch by sending me surprise Amazon parcels and for being the super strong and capable big sister (despite me being 18 months older, age doesn’t matter in chronic illness) and looking after me whenever we are together.

29. I’m involved with Invisible Illness Week because: I can be so I am. It’s so important to raise awareness.

30. The fact that you read this list makes me feel: appreciated, valued, a little bit more understood.

Thank you for reading. Did my answers surprise you? Did you learn something about invisible illness that you didn’t already know?

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34 Responses to “30 Things You May Not Know About My Invisible Illness”

  1. thehomeschoolingdoctor September 3, 2013 at 12:33 pm #

    Mind boggling illness! As I’m a follower of your blog, most answers seemed in-line with what I expect. But just the fact that all you want to do if you “got a well-time” is cook and have dinner with family tells a person just how awful you must feel! As far as 23, I think people are just trying “to do the math” aloud. I think they believe you, but it is hard for people to comprehend. And lastly, I had no idea what a meme was…how do you pronounce it? LOL!

    • myjourneythrume September 3, 2013 at 1:46 pm #

      I have no idea how you pronounce it! Of course there’s loads of big things I want to do when I’m well but it’s the little things I miss most. Thank you for reading and for understanding 🙂

  2. currankentucky September 3, 2013 at 1:19 pm #

    Hahaa, we have the same answer for no 23!!! i went and did mine up before reading yours and its funny now comparing our answers!! What a great idea by Lisa. Must go and link mine up now. The brain is dead!

    • myjourneythrume September 3, 2013 at 1:41 pm #

      Glad it’s not just me that feels that then! Great minds think a like…I took about 3 days to do mine I’m impressed you’ve done yours so quick. Rest well!

      • currankentucky September 3, 2013 at 1:46 pm #

        When my brain is awake it fires, and i mean fires, smoke, steam the lot. Down time now!

      • myjourneythrume September 3, 2013 at 1:47 pm #

        Haha, great image! I can see smoke coming out of your ears and flames from your eyes!!

      • currankentucky September 3, 2013 at 1:48 pm #

        Trust me, it’s very much like that!! LOL

      • myjourneythrume September 3, 2013 at 1:52 pm #

        I know what you mean, I have bursts of energy / alertness / with-it-ness and I think wow this is great! Then it passes and I’m like rubbish now I’m exhausted again! Time for a rest for me too. Rest well your brain deserves it!

  3. geocachingwithgeokids September 3, 2013 at 8:42 pm #

    I didn’t get too far on the reading today, my symptoms have spiked, my concentration is non-existent and I feel like I got hit by a bus. But what I did read I found was repeating myself everyday life.

    • geocachingwithgeokids September 4, 2013 at 12:30 pm #

      Hi Jess

      Me again, feeling a little better today so have decided to take part in this. I do hope you have no objections to me linking you in too 😀

      Faye (Lumi – Geocachingwithgeokids)

      • myjourneythrume September 4, 2013 at 1:32 pm #

        I’m very happy that you want to link up to me! Thanks! Glad to hear you’re feeling better. Nice to know you relate to what I wrote tho I wish you weren’t suffering too.

      • geocachingwithgeokids September 4, 2013 at 1:42 pm #

        I can say the same to you too – but hey, we’ve both found a way to deat with – we speak out and let the whole world know 😀

      • myjourneythrume September 4, 2013 at 1:44 pm #

        Yep and it’s pretty good therapy isn’t it?!

      • geocachingwithgeokids September 4, 2013 at 1:48 pm #

        Absolutely, however I’m still going to go through referral for counselling again as this time it’s not quite enough with the blog alone.

      • myjourneythrume September 4, 2013 at 1:50 pm #

        I keep thinking about getting a counselling referral too, i think would help to talk to someone as good as blogging is!

      • geocachingwithgeokids September 4, 2013 at 1:52 pm #

        I had cognitive behaviour therapy about 18 months ago and found it really helpful. It’s a good way to learn how to turn our negative thought processes into positive ones. Especially helpful on days where I feel guilty that everyone else is having to do my chores as well as their own.

      • myjourneythrume September 4, 2013 at 2:40 pm #

        I did CBT early on in my illness, didnt get on that well with it but I don’t think I was well enough to cope with it then. Ive been looking into recently. Negative thoughts are such a problem for me too.

      • geocachingwithgeokids September 4, 2013 at 3:14 pm #

        Give it a shot, what do you have to lose? Other than a little bit of time. All mine was done over the phone 😀

      • myjourneythrume September 4, 2013 at 3:31 pm #

        Exactly nothing to lose! Yes I’d want it done over the phone or Skype, traveling to appointments wipes me out so much it negates the point of going to the appt!

      • geocachingwithgeokids September 4, 2013 at 3:31 pm #

        Exactly 😀

  4. dawnhosking September 9, 2013 at 10:24 am #

    I like your motto. I also benefit from daily, gentle, yoga and meditation. I like to maintain my cognition by doing a bit of writing when energy rations allow too 😉 It’s really nice to meet you.

    • myjourneythrume September 10, 2013 at 10:05 am #

      So nice to meat you too 🙂 I find writing blog posts is oddly easier on my poor brain than reading sometimes and you’re right it is so good at maintaining cognition. Sometimes I worry that my brain is slowly losing its ability but as long as we keep writing we’ll be all right I hope!

      • dawnhosking September 10, 2013 at 10:24 am #

        I think so 😉 I always remember the old saying of ‘if you don’t use it, you lose it’ so I suppose I’m working on not letting that happen. I find it gives me a purpose too – being creative is what I can do at this time and it makes me feel good 😉

      • myjourneythrume September 10, 2013 at 10:56 am #

        Yes it totally gives me a purpose too and definitely makes me feel good too.

  5. Linda Williams Stirling September 14, 2013 at 5:49 am #

    Reblogged this on Linda Williams Stirling and commented:
    Almost missed that this was Invisible Illness Awareness Week. I hate to to totally miss the opportunity to share something with you folks, since I suffer from several “Invisible Illnesses.” So, I present to you a post from a blog I follow, My Journey Thru M.E. I hope you find it enlightening.

  6. Jumping_Jenny_444 September 16, 2013 at 11:30 pm #

    I love that song by Kelly Clarkson! Every time I hear it, I think “yep. That’s true–‘what doesn’t kill you makes you stronger’!” Hearing that song makes me feel stronger! 🙂

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