Monday 6 August 2012

30 things you may not know about my invisible illness....



Ok, so it is coming up to invisible illness week and so I decided I would complete the '30 things you may not know about my invisible illness'


I am usually very hesitant to be honest about my pain and actually how hard it is to live in constant severe pain.  I find myself always trying to cover up and hide it and act like there is nothing wrong and like I don't have a care in the world... but that is very exhausting!  


I have opened up a few times in the past and actually the times when I have been really honest with people I have always found it to be a positive and helpful experience.  Plus I know I get frustrated with people for not understanding and wish people did, but how can people understand what I go through and what I live with unless I tell them and am honest and open with them.







So, here it goes...

1. The illness I live with is: Chronic Pain Syndrome


2. I was diagnosed with it in the year: Apr 2010

3. But I had symptoms since: March 2007

4. The biggest adjustment I’ve had to make is: to slow down and pace myself - it has taken a long time and still is for me to realise that I have different limits/stamina/abilities to what I used to and that some things (in fact pretty much everything...) take me a lot longer now

5. Most people assume: I am always completely happy and care free.  Yes I am to an extent but not always and I do cry, a lot.  Life isn't easy

6. The hardest part about mornings are: Realising I have to face yet another day of pain

7. My favorite medical TV show is: I quite like 24 hours in A and E

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

9. The hardest part about nights are: When it gets to the point that I have been awake in bed for more hours than I have left before I have to get up

10. Each day I take __ pills & vitamins. (No comments, please) None - pain killers don't seem to be able to touch my pain

11. Regarding alternative treatments I: just started a trial of acupuncture this week which so far has not been fun, but I am willing to try anything to help reduce my pain.


12. If I had to choose between an invisible illness or visible I would choose: Um none? :o)  But if I had to chose probably visible.  If you could see pain and see how much I am in, I think I would be better understood and wouldn't be expected to do quite so much although I don't think I would be wanted to be treated as a patient all the time - I do quite enjoy the normality of my life, however hard I have to work for it.

13. Regarding working and career: I have just finished a National Diploma in Art (there were some rocky times health wise when I wasn't sure I would be able to complete the course but I did :D) and am about to start a degree in Creative and Therapeutic Arts (basically the lead into Art Therapy...)


14. People would be surprised to know: I am in pain 24/7.  It never lets up and not just a slight ache but the worst pain I have ever experienced. Plus it is not just my knee that hurts - there is lots of me, particularly my hips, ankle, back, wrists and hands.  I have not had a single waking moment since March 07 when I have had no pain, and that is tough.

15. The hardest thing to accept about my new reality has been: Pain.  And also the fact that I have a loving saviour who cares for me completely and knows me intimately (including my pain) who is all powerful, who is control of everything, who made the universe, who could take my pain away instantly allows me to continually suffer is a really hard thing to accept.  Some days I have accepted it ad trusted it to him, moved on and that's ok.  Other days though are much tougher and I really struggle to accept it.

16. Something I never thought I could do with my illness that I did was: Learn to drive :o) and I guess be more joyful than I ever was before all the pain and rubbishness...

17. The commercials about my illness:


18. Something I really miss doing since I was diagnosed is: Ok so believe it or not but I would actually have to say sport.  Yeah I know I wasn't ever sporty but I really enjoyed wide games and I loved badminton and netball.  Also really enjoyed trampolining.  I even sometimes really miss running or just the sensation of weight going through my legs normally.  Like it sounds stupid and bizarre but my whole body feels kind of out of balance and all weighted to one side.  There have been times particularly when going down a hill or something when I have just been desperate to chuck my crutches to the floor and sprint down the hill.  Its ok though - in Heaven I'm going to be able to run down huge hills without any pain :D

19. It was really hard to have to give up: My hands!  Using crutches all the time is pretty awkward and means you can't do anything whilst you walk.  Also putting the majority of your weight through your hands every time you take a step really takes its toll - hands and wrists were not designed for that!

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

21. If I could have one day of feeling normal again I would: spend time with people just talking and being able to take it all in, without having to hold back the tears from the amount of pain I am in, without feeling dizzy and like I am about to pass out, without my head feeling fuzzy but just to be able to concentrate completely on what they are saying what their concerns are without having half my mind elsewhere...

22. My illness has taught me:  Total dependence on God - 'I lie down and sleep; I wake again, because the Lord sustains me.'  Psalm 3:5

23. Want to know a secret? One thing people say that gets under my skin is: "I know what you feel like/ how hard it is - my knee ect is playing up too!" or "I am like you now with my bad leg!" or "You don't know what real pain is - I once .... and that hurts"


24. But I love it when people: Ask me how I am doing and genuinely want to know the answer (rather than just expecting the answer to be 'good thanks') and when people encourage me to keep running the race and that Heaven is near...

25. My favorite motto, scripture, quote that gets me through tough times is: "It often takes an experience of crippling weakness for us to finally discover God's blessing. That is why so many of the most God-blessed people limp as they dance for joy." 


26. When someone is diagnosed I’d like to tell them: This life is hard but temporary and momentary - never forget that!

27. Something that has surprised me about living with an illness is: Just how much I have to think absolutely every little thing through and just how much it can impact on every single part of my life

28. The nicest thing someone did for me when I wasn’t feeling well was: Sent me a card just with this simple message inside 'I just wanted to write to say how much I feel for you in your ongoing pain - I so admire your courage in always putting on a brave face, when underneath you're still hurting so much.  It pains me to think of your struggle - and as part of one body I am sad with you. I'm praying for you.' and another one I got from other friends just read 'Sorry to hear how tough life is for you right now.  We have been praying a lot for you this week.'  I cannot express how much little things like that mean to me.  Even when people just let me know they are praying  or send me a link to a song they think I might like it really makes the world of difference to a life filled with pain.


29. I’m involved with Invisible Illness Week because: I am feeling very alone right now and needed encouragement.  It has also been a helpful way to be able to talk about my pain and struggles.

30. The fact that you read this list makes me feel: More understood, less alone and like people genuinely care.

Ok so I think my least may seem all seems a bit doom and gloom... I am suffering and yes life in pain is so hard but I am not bitter and I'm certainly not miserable.  Yes, there have been many tears shed and I am sure there will be so many more to come (but after all... "How can God dry your tears in the next world if you have not wept in this one?") but God is so good.  The worse a situation feels the better things around me seem and the more noticeable the positives become.  Heaven is more of a goal then ever - my life is driven with my eyes on Christ and on Heaven, where I know one day I will be dancing pain free with my loving saviour forever!