Sunday, September 16, 2012

30 Things about my invisible illness you may not know. The 2012 edition.

I did have another post planned for today about navigating beyond hopelessness, but I got halfway through it and brain fog stopped me in my tracks. So far it has been much more difficult and emotional to write than I thought, and for some reason, it just didn't feel like the right time for me to publish it, so I'll finish it off some other time. I may just save it for Invisible Illness Awareness Week next year.
 
So for today, I'm doing something that requires much less brain power- I've filled out the 30 Things Meme. I know I've filled this out every year, but a lot of things change in a year, and therefore, so do my answers.
 
 
1. The illness I live with is: Rheumatoid Arthritis (RA), Fibromyalgia (FM/FMS), Chronic Fatigue Syndrome (CFS/ME) and Endometriosis.
 
2. I was diagnosed with it in the year: I was diagnosed with unclear inflammatory arthritis in 2007, but an official name for it wasn't confirmed until 2011. I am relieved that I have a name for it now because there are many types, and I now longer have to endure other medical professionals questioning my diagnosis. I am on the right medication now too, and it is helping a lot. I was also diagnosed with Endometriosis (after a diagnostic laparoscopy), and Fibromyalgia in 2007. I wasn't officially diagnosed with CFS until 2011 also.

3. But I had symptoms since: I've had Endometriosis symptoms since 2004, and all other symptoms started appearing in 2006 immediately after I had my wisdom teeth removed.

4. The biggest adjustment I’ve had to make is: Learning to listen to my body, and making sacrifices. I'm constantly having to think how an activity will affect me the following days and even weeks. I've had to make many sacrifices to cope with these illnesses.

5. Most people assume: That if I can do a certain thing one day and be okay, then I can do it again the next day and cope too. One day I may feel fine, and the next I'm feeling like death warmed up. Sometimes there is no rhyme or reason to it. Often with an illness like Fibromyalgia and CFS, symptoms can wax and wane. There are periods when the fatigue is much worse, and then there are times when the pain is more troublesome. People also assume that if you have arthritis, you have swollen joints. It's true that many do have swollen joints, but then there are people like me. Fortunately for me, the disease was caught early, and treated properly. This doesn't guarantee that my joints won't become swollen in the future, but it does give me a much higher chance of a good prognosis.
 
6. The hardest part about mornings are: Walking down the stairs in the morning with sore joints.

7. My favorite medical TV show is: Grey's Anatomy.

8. A gadget I couldn’t live without is: My laptop. Hands down.

9. The hardest part about nights are: The pain. It can get worse at night time. It's hard when the Fibromyalgia pain flares as it hurts to lie down. Fortunately, I've found a combination of drugs that help, and I am able to sleep well (although I never wake up feeling refreshed).

10. Each day I take: 12  pills & vitamins. I also take a low dose chemo drug once a week, and I inject a TNF blocker medicine fortnightly which supresses my immune system. (No comments, please)

11. Regarding alternative treatments I: Have tried a few but didn't have much success.

12. If I had to choose between an invisible illness or visible I would choose: Invisible. As much as I dislike all the challenges (medically and socially) that come with having an invisible illness, I like that I have a choice in who I tell, who I don't, and how much information I disclose. I'm thankful that I can pass as normal and be able to keep my health struggles private when in public. If I had a visible disability, that wouldn't always be possible.

13. Regarding working and career: I'm working one three hour shift a week. Some weeks I really struggle. I'm trying a graded exercise therapy program, and I'm currently waiting to see if implementing some changes and coping strategies at work helps.

14. People would be surprised to know: That CFS does not just cause fatigue. People hear the term "chronic fatigue" and immediately think that your only problem is tiredness. No, it's much more than that. I struggle with cognitive problems, brain fog and mental fatigue. I can also feel nauseous, my glands hurt, and I often have a sore throat.

15. The hardest thing to accept about my new reality has been: Having unanswered questions. CFS and Fibromyalgia, in terms of medical research, still remain a commonly misunderstood mystery. No one can give me clear answers, and everyone has a different opinion on how to treat my conditions. Often these opinions and advice are conflicting, and controversial.
 

16. Something I never thought I could do with my illness that I did was: Spend a week holidaying in Queensland, riding wild rides at theme parks and sight seeing. I paid for it dearly months afterward, but I did it. I may ache all over and feel bone tired at times, but my body still works, and I can still do things.

17. The commercials about my illness: Make me angry. They generalise arthritis, so people assume that I can just take a high potency fish oil and get on with things. Fish oil ain't going to fix Rheumatoid Arthritis. I require many strong drugs to be able to function every day and I still hurt. Some days a really painful.

18. Something I really miss doing since I was diagnosed is: Running. It was the thing I loved to do the most. I hope that one day I'll feel well enough to run again. I'd really like to run marathons to raise research funds and awareness for CFS and Fibromyalgia.

19. It was really hard to have to give up: My studies. I'm focusing on getting some strength back through graded exercise in the hopes that I'll be able to manage part time study online. The issue with my course is that it's very demanding, and I don't yet feel well enough to manage placement which requires hours that I'm not capable of working, with a room full of children who are bounding off the walls with energy.

20. A new hobby I have taken up since my diagnosis is: Blogging, nail art and cardmaking.

21. If I could have one day of feeling normal again I would: Go for a long run along the beach. Other than that I don't know what I'd do. I've been sick for a long time, and some days it's really hard to imagine my life without the pain and fatigue. I'm sure when that day comes, I'll know exactly what I'd like to do.

22. My illness has taught me: To dream big.

23. Want to know a secret? One thing people say that gets under my skin is: "Oh, I'm tired as well!", or "I think I have chronic fatigue, too". Oops, that's more than one! I'm constantly fighting the urge to want to stab people with a fork. Unless you are forced to rest after a shower, you have no idea what fatigue is.

24. But I love it when people: Send me a message or give me a quick phone call. It's nice to know that I haven't been forgotten and that people do still care.

25. My favorite motto, scripture, quote that gets me through tough times is: Those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. - Isaiah 40:31
 

26. When someone is diagnosed I’d like to tell them: Let go of expectations you have of others, especially if you're living with an invisible illness. When I became ill, I just expected that people in my church, and my family and friends would always be there for me. I became very bitter and angry when they disappointed me and life became very lonely. I wrote about the loneliness here. Others can't understand unless they've been through it, and as hard as it is, you can't expect them to understand. Find hope and connect with others who are going through the same struggles. You'll be much happier when you do. This is what I wish someone had told me earlier.

27. Something that has surprised me about living with an illness is: How much of a blessing it is. Early on in my journey, I never thought that my struggles would turn into some of my greatest blessings. Through this blog I have met so many amazing people from around the world that I am truly blessed to know. These people have mad a difference in my life. I have different and better dreams - I dream much more bigger now, and I have no doubt that because of these struggles, I will gain incredible opportunities.

28. The nicest thing someone did for me when I wasn’t feeling well was: A blog reader sent me a bunch of skin goodies to enjoy. They have helped me through many bad days (thank you Kathrin!).

29. I’m involved with Invisible Illness Week because: It's a great week to get involved in and help give people hope. Hearing "Hey, I feel the exact same way, you're not alone, I understand, and I am hear for you" or "I haven't been able to find the words, but you've just expressed how I've been feeling, and now I'm feeling less alone"; is indescribably comforting.

30. The fact that you read this list makes me feel: Encouraged. Because of you I know that I'm not alone and that gives me hope. Thank you.
 
 
PS. For more creativity, fun, positive quotes, humour and blog updates, make sure you join the facebook page.
 
 

4 comments:

Alanna said...

I love reading your blog Emily. Your openess and honesty always inspires me to stay strong as well. Thank you :) I'm in constant admiration of you and what you achieve :) Thinking of you ox

If I have time in the next few days, I might do my own 30 things post. I've always thought of doing one... just not sure I can be as truthful as you!

marsanderson said...

Yes, what she said! You are definitely not alone, and I find you inspiring as well. Your blog and Facebook posts remind me that there is more to me than fibromyalgia.

Thank you <3

blairmyalgia said...

THANKYOU I have a blog but dealing with so.many health problems I just can't seem to write as well as I once did . Your words are spot on .

blairmyalgia said...

I'm also on Twitter @Blairnboca & dealing with fibro ,cfs ,Sjogrens ,mixed connective tissue disease menieres & now non hodgkins lymphoma for 25 years

Awards. Proof that I'm awesome.

 

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