Monday, 10 September 2012

30 things you may not know about my invisible illness

As you may or may not know this week is invisible illness week so I thought I'd do a meme thats been going around and bore you all stupid about RSD.

1. The hidden illness(es) I live with are:

  • Reflex Sympathetic Dystrophy/ Chronic Regional Pain Syndrome
  • Depression

2. I was diagnosed with them in:

RSD in September 2007 and Depression in February 2010

3. But I had symptoms since:

The RSD since April that year and who knows with depression

4. The biggest adjustment I’ve had to make is:

The fatigue and having to plan everything to make sure I'll have enough energy to get through what I need to do. Also being permenantly reliant on crutches or a wheelchair. Also, how unpredictable things are and having to be realistic about my dreams. I was going to be a teacher but now that seems like its not going to happen, not very fair on the kids if you can't get up every morning!

5. Most people assume:

That I just have a sprained ankle as I''m hopping around on crutches or that when I use my chair I'm paralysed; nobody can see pain and fatigue or lack of motor control from the outside.

6. The hardest part about mornings are:

Waking up and actually getting moving, because I sleep very badly I'm often tired in the mornings and the inertia is very bad so it takes a lot of effort to get moving and waking up in pain is never fun!

7. My favorite medical TV show is:

I'm addicted to Casualty and Holby City as well as Grey's Anatomy. My med student friends and my doctors when I'm in hospital are I'm sure very irritated about my endless questions of "is your life really like that?!" But you'd be surprised how useful Casualty is when learning the heirachy of doctors!

8. A gadget I couldn’t live without is:

My electric wheelchair because it means I can get out on my own and my computer because it keeps me connected even when I can't get out of bed.

9. The hardest part about nights are:

There are two things, one is that the pain is worse because of moving during the day and having less distractions, that and being very frustrated by not being able to sleep and being in too much pain to get comfy.

10. Each day I take 12 pills & vitamins.

I also have a fentanyl patch.

11. Regarding alternative treatments:

 I have physio and hydrotherapy but other than that I don't have any alternative treatments I'm worried that they would either be a waste of money or cause the rsd to spread.

12. If I had to choose between an invisible illness or visible illness I would choose:

I honestly don't know. I'd like not to have any illness!

13. Regarding working and career:

I took a year out of my degree and just got the doctors ok to go back and finish it, after that I don't know because I don't know what finishing my degree will do to me. I was going to teach but because I don't know when my days will be good or bad that doesn't seem fair. I'd love to do something working with kids though, maybe a part time librarian or education officer for museum.

14. People would be surprised to know:

3 weeks before my relapse I ran 5k for charity. I have a very large collection of stuffed toys.

15. The hardest thing to accept about my new reality has been:

I'm a bit of a control freak so accepting that I might not be able to carry out my plans was hard. Also having always dreamed of being a teacher realising I might not be able to do that and giving up a job was heartbreaking.

16. Something I never thought I could do with my illness that I did was:

Go to the Paralympic Games, my illness turned out to be an advantage as I got Danielle Brown's autograph!

17. The commercials about my illness:

There aren't any. Do we get illness commercials in the UK?

18. Something I really miss doing since I was diagnosed is:

Driving, I had a manual car and am too spacy on my meds to drive an automatic. That and going out on my own, I need to much help with the chair and am too prone to fainting to go anywhere I can't be rescued from!

19. It was really hard to have to give up:

Control, Teaching, my independence.

20. A new hobby I have taken up since my diagnosis is:

Blogging. I've loved having my little space on the net to write whatever I want.

21. If I could have one day of feeling normal again I would:

Go shopping on my own to the new Stratford Westfield!

22. My illness has taught me:

That not all people are nice, I know now who my true friends are and I love them from the bottom of my heart. Also that people don't understand chronic pain or the need for medication.

23. Want to know a secret? One thing people say that gets under my skin is:

When people say I just need to fight harder or tell me to come off my meds or call me a druggie! (ok thats more than one thing but I'm holding back here!) Oh yeah and tell me this is my choice.

24. But I love it when people:

Just talk to me like normal.

25. My favorite motto, scripture, quote that gets me through tough times is:

"We're all in the gutter but some of us are looking at the stars"- Oscar Wilde. Also seeing Danielle Brown, the paralympic archer with RSD compete is just so inspirational, I think if she can win a gold medal then I can shower and get dressed today.

26. When someone is diagnosed I’d like to tell them:

You will have to fight for help. Do your research and get referred to the right places and the right treatments. Find a good GP, they are a lifesaver. You need to adapt your life but it isn't over.

27. Something that has surprised me about living with an illness is:

I don't care what people think anymore. I'm also so pleased with little things that happen like going for a meal.

28. The nicest thing someone did for me when I wasn’t feeling well was:

I don't know, offering to stay the night in hospital with me, giving me something to look forward to plans wise. there are so many things and my mum looks after me everyday as I've become so dependent on help.

29. I’m involved with Invisible Illness Week because:

I have experienced people marginalising my experience of being ill and I don't want that to happen to other people. By educating others about invisible illness hopefully sufferers will be treated better and you never know, the more people I talk to, the more people they mention it to, it might end up getting talked about so much there begins a real fight for a cure!

30. The fact that you read this list makes me feel:

Slightly embarassed that I've opened myself up so much but incredibly grateful that you've taken the time to read this.

10 comments:

  1. Thanks for sharing your 30 things!!

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  2. Such an honest post :) It is so good to open yourself up like this! Fab job.

    xo,
    LelaLondon.com - WIN 3 dresses!

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    1. Thank you very much for reading this Lela and for your lovely comment. x

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  3. aww a lovely post. I loved reading your thoughts x

    I suffer with under active thyroid and although I have to take medication for the rest of my life people don't realise how awful is it. Its very common though but because its invisible people don't realise.

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    1. its not fun is it, i'm sorry you have that to deal with xx

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    2. I have an idea how you feel. Three years ago I broke a foot. Nothing major, 6 weeks in plaster but when the cast came off, the bone had healed but the top of my foot was so sensitive that I couldn't get a shoe on and tie the laces, even a flip flop was impossible. Various experts looked at it and no real answer was found except maybe CRPS and so I had to get used to on crutches for 70% of the time and doing everyting with a bare foot!
      Then in the September 2010 earthquake the foot got crushed. Plaster for ages, crutches for an extended period and it still didn't help. What I now know is with a cast I can walk if there is plenty of padding on the foot part of the cast and the fibreglass isn't wrapped too tight or partially weight-bear with crutches and no cast. There hasn't been a shoe on that foot for two years now, just the odd cast. When not in a cast the dr won't let me walk lopsided with only one shoe, so I either try to cope with flip flops but generally I am in bare feet. I have learnt heaps the last three years.

      1/ It is really annoying when I am not on a cast people keep saying asking why I am still on crutches

      2/ When I am walking around mid-winter in bare feet, don't ask "Aren't your feet cold?" Of course they are! I hate using a wheelchair when I am able to use crutches, even if I can't wear footwear.

      3/ After months of practice on all sorts of crutches, I prefer the underarm type. Easier to use for carrying things and I can stand up, tuck them under my arms and my arms are free to to whatever I want, unlike forearm ones which are a hassle with the cuffs attaching them to my upper arms

      4/ When I am in a cast and able to walk on it crutches-free it doen't mean that when the cast is off I will suddenly have a miracle cure

      5/ Sometimes my crutches chafe my sides (underarm crutches have their drawbacks). If the only way to be comfortable is to take my annoying shirt off and keep it off for a few days until the chafing subsides, that is what I will do. Haven't you seen a topless guy in public before?

      6/ Yes, I can make it down that rocky/muddy/steep path on crutches, I have been practicing for years!

      6/ Yes, I can make it down that rocky/muddy/steep path in bare feet (see above)

      7/ No it is not going to be easier for me to get around your mall in a wheelchair.

      8/ Crutches are difficult in snow. Crutches and flip flops in snow are worse

      9/ "Where are your shoes?" is not a question I need when it is 5 degrees, raining and I have been to a friend's place and his muddy driveway has left it's mark on my bare feet before I stop at the supermarket. See these things? They are crutches. perhaps an indicaton that I am not 100% in the foot department!

      10/ The girl at the bank has no idea how idea how good it made me feel when this happened. I had the dreaded crutches chafing, so I was shirtless and barefoot, not the normal attire when it is 10 degrees outside. This was one of the first times I had tried doing the topless on crutches thing so I was feeling very self-consious, everyone else in the queue was wearing boots and coats. I had managed to keep the bad foot clean but the good one was a little muddy again. When my turn came I crutched to the counter. "Do you want my shirt?" the girl asked. I explained why I was considerably under dressed for the weather and the occasion. "Man, that sucks, how long will you be on crutches" I expained that as well. "So you are going to going around like that for ages then?" I explained that the bare feet and crutches were semi-permanant but in a few days I might manage a shirt again. "No, that looks awesome! It looks cool with crutches and bare feet. Being topless as well is a great look. Don't put a shirt on."

      So I guess what I am trying to say is you aren't alone, Do whatever you need to do to be as comfortable as you can and forget what anyone else says or thinks. They are not in your shoes, on your crutches or in your wheelchair.

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    3. Thank you so much for your lovely comment!

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