Tuesday, 29 September 2015

30 Things You May Not Know About My Invisible Illness- #IIWK15


This week, 28th September- 4th October is Invisible Illness Awareness Week. Many of you probably know that I have been chronically ill for almost ten years now and although I do often use a cane, most of my illnesses and symptoms are invisible. This of course opens up doors to ignorant people assuming I'm not ill and the inevitable "but you don't look sick", but not all illness are seen, in fact most of what goes on in our bodies happens under the surface. So today I'm taking part in the 30 Things About My Illness Meme, to give you a bit more of an insight into my illness and life with it.







1. The illness I live with is...
Systemic Lupus (I also have Anxiety, Depression, Osteoporosis and Arthritis and some other smaller things)

2. I was diagnosed with it in the year...
 Lupus- 2005, everything else came after or as a result of it.

3. But I had symptoms since...
Probably around 2002, I was always ill in the sun and my mother was a neurotic parent for years. But the really big things like kidney problems and mouth ulcers came a month before diagnosis.

4. The biggest adjustment I’ve had to make is...
Accepting that I cant do everything and that I get tired very easily. I can't really remember life before being ill now but I know I had more energy!

5. Most people assume...
That I'm lazy or don't want to work. That I'm flakey, when really I want to spend time with those I love my body just won't let me.

6. The hardest part about mornings are...
Not having the energy to do normal things and the random pains.

7. My favorite medical TV show is...
I dont have one, sod House and "it's not Lupus", because guess what pal it is and it's not a funny catchphrase. I love what The West Wing did to raise awareness of MS though.

8. A gadget I couldn’t live without is..
 
Obviously my phone, its a massive lifeline, but I couldn't get through bad pain days with my heat pack bear.

9. The hardest part about nights are...
Painsomnia, when you're exhausted but can't sleep from pain and then my anxieties come out to play.

10. Each day I take 15-20 pills
That's actually not that many in the spoonie community.


11. Regarding alternative treatments
I don't believe in it, give me drugs!

12. If I had to choose between an invisible illness or visible I would choose...
I already have a mixture of both and I prefer that, but I'm definitely treated more politely and understood better when I use my cane.

13. Regarding working and career
I've accepted that I can't do a typical 9-5 and that PR is a pretty hectic career path, so I'm taking it one day at a time and finding things to do from home such as research work, writing and small bits of social media when I can.

14. People would be surprised to know...
That my pain score is much lower than theirs. I've been ill for so long that unless I'm in unbearable screaming pain I will always classify my pain as a 6 at the very highest. When you're in pain every day, everything can't be an 8.

15. The hardest thing to accept about my new reality has been...
That I have to plan everything in advance, I can't just get out of bed in the morning and run and do things.

16. Something I never thought I could do with my illness that I did was...
Leave home and live with my partner, be accepted and loved for who I am without my illness scaring someone off.

17. The commercials about my illness..
Don't exist in the UK (sorry americans!)

18. Something I really miss doing since I was diagnosed is:
I honestly don't know how to answer this, I've been ill since I was 16 so I don't really know an adult life without illness in some way. I guess not being in pain but I had smaller things when I was younger.

19. It was really hard to have to give up...
Thinking I could do anything without it making me ill, everything has consequences now and I have to weigh up if things are worth the pain.

20. A new hobby I have taken up since my diagnosis is...
Blogging, I originally started blogging in 2009 to get away from depression and my crappy life, but now so much of my life is on my blog and I love it.


21. If I could have one day of feeling normal again I would...
 
Eat all the crap, drink all the wine, stay up far too late and use up far too much energy.

22. My illness has taught me... 
That life is worth living for today, you shouldn't give up on your dreams, just make them more attainable and that it's always ok to ask for help.

23. Want to know a secret? One thing people say that gets under my skin is...
"God you're so thin" yes I've thrown up every meal this week. "oh but you look so well" it's called makeup. "you're so young for all of this illness" illness isn't ageist.

24. But I love it when people...
Are understanding and don't force me into anything. When friends come visit me on bad days or message me when they see I'm ill

25. My favorite motto, scripture, quote that gets me through tough times is...
"Tell them to look up, tell them to remember the stars. The stars are always there but we miss them in dirt and clouds, we miss them in storms. Tell them to remember hope, we have hope"-Renee Yohe, the inspiration behind To Write Love On Her Arms.

"Smart people who love you are going to have your back"- Abby Bartlet, The West Wing

26. When someone is diagnosed I’d like to tell them...
That this is not the end, you will be ok. There is so much help and so many people that will be there for you.

27. Something that has surprised me about living with an illness is... 
The amount of support and love the online community has to give, thanks to the internet there is always going to be someone who I ca talk to day or night who will understand what I'm going through

28. The nicest thing someone did for me when I wasn’t feeling well was...
I've had so much love from friends and family, from my Mam staying with me in hospital for almost a month to my boyfriend looking after me every day. but the nicest recently was when I was in hospital in August, new friends who helped me to the Dr's, gave me somewhere to wait to be taken to hospital and then visited me when I was there (thank you Andrea, Laura and Rhian). The outpouring of kindness always shocks me.

29. I’m involved with Invisible Illness Week because...
I want to help raise awareness of what others and myself go through and remind others that its not just doom and gloom.

30. The fact that you read this list makes me feel.. 
Happy and loved, that you care and thankful that you took the time.

If you'd like to read more about my illnesses, check out the Health section of my blog 


5 comments :

  1. I like what you did with this meme especially with #21! Stopping by from Spoonie Blogger and Vloggers!

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  2. I am so glad to have found your blog through the IIAW link up! I love reading others' posts and being able to really feel like someone else gets what its like to live with illness day in and day out. I'm definitely looking forward to reading more of your blog!

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  3. I love this. I must do it. I love the online community, so supportive.

    Sarah x

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  4. This was a really interesting post. I've been reading here for a while but this has given me a real insight, thank you.

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  5. For the last 9 years I've supported university students on campus to access whatever their disability would generally prevent them doing. And I've had students with both visible and invisible illnesses/impediments. It's always interesting to learn about another person's experience, to get a glimpse form their side of things, and I think it's great that you're willing to share your experiences so that people who don't have an illness are made aware and that those with one know they're not alone. Good for you!

    Julie

    [p.s: I'm on a self-imposed blog-commenting challenge to visit new bloggers and leave #300in30days. You're comment No.150 - thanks for giving me something interesting to comment on!]

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