"Where there is creativity, there is hope." ~ Donna Karan

30 Things about my invisible illness you may not know: The 2013 edition.

by - Sunday, November 03, 2013

I did plan to have my 30 things meme posted for Invisible Illness Awareness Week, but nope, my foggy brain wouldn't let me up until now. You better like it because it took me a frustrating month and a half of bashing my head on the keyboard to write it.
Looking healthy while feeling really crappy is what I do best.
1.The illness I live with is: Fibromyalgia, Endometriosis, Chronic Fatigue Syndrome and Rheumatoid Arthritis.
2. I was diagnosed with it in the year: 2007.
3. But I had symptoms since: Early 2006.
4.The biggest adjustment I’ve had to make is: Relinquishing control, accepting the unpredictability and embracing spontaneity. Stopping my pre-sick routine has been hard. I'm a real control freak - I like routines and I like being organised. I like having some control over my life and knowing where I'm going. I like powering through to-do lists and having set times for tasks. With chronic illness I've had to become more flexible and accept that quite often I won't be able to do what I want whenever I want to, and this frustrates me.

5. Most people assume: That I spend all of my time at home doing fun crafty things. People see the pretty nails and a plate of baked goods and think that I am living the dream. Yes, there are some days I can do a few bits and pieces, but there are also many days and long periods of time when I simply cannot. It's these days that you don't see and don't often hear about. They are really, really hard. It's not all craft and glam over here - chronic illness isn't fun. I'm not running around the house in an apron unleashing my inner domestic goddess all the time. I'm either trying to catch up on chores that didn't get done on the bad days, or I'm watching TV and fluffing about on my laptop because I'm too sore and tired to do anything else. A lot of people think that not having to work and being able to stay at home all day is the ultimate dream. Being unable to contribute to society and earn your own money year after year is just so much fun SAID NO SICK PERSON EVER!

6. The hardest part about mornings are: Getting out of bed. It's been especially hard to get up and get going this year as I'm feeling more ill and depleted of energy than I ever have before. Some days the exhaustion is so great that just getting out of bed is my only achievement.

7. My favorite medical TV show is: Grey's Anatomy. The new season has just stared here in Australia and I am loving it! Although, so far it's intense and I find myself relating to this right now:
8. A gadget I couldn’t live without is: My electric facial steamer/cleanser. It's a convenient way to steam and deep cleanse your face, and it's relaxing too! It helps to calm facial redness and heal blemishes that my medications cause. Definitely can't live without it.

9. The hardest part about nights are: Not having enough energy to go out with friends and do things like go to a party or a church event. My social life has been in the toilet a lot lately and I was really hoping that would change this year, so it really sucks when the fatigue is intense and I'm feeling too sore. I've been dealing with a constant headache this year (which I'm still trying to get sorted) and it usually becomes worse late afternoon and in the evening, so I don't very often feel like socialising with a pounding/aching head. It makes it very difficult to meet new people and make new friends. I fear I'm going to become the crazy cat lady! I'm supposed to be in the prime of my life and I'm not; I feel like I'm missing out on a lot.

10. Each day I take 12 pills & vitamins. (No comments, please.) And that's not counting my weekly dose of Methotrexate, the fortnightly injection of Humira and my monthly medications for Endometriosis pain. Yep, I'm a walking pharmacy!

11. Regarding alternative treatments I: Am looking into vitamin IV therapy as a possible treatment to try for Chronic Fatigue Syndrome. I've heard some people who have recovered from this illness swear by it. I have an appointment with an integrative GP coming up and I'm looking forward to getting a 367th opinion (that was sarcasm, people!) Although my rheumatologist has strongly recommended I be very careful not to get my hopes up.

12. If I had to choose between an invisible illness or visible I would choose: Visible. Why? This year has been the toughest year I've had. I've been struggling with a constant headache and facial pain which has exacerbated the fatigue. I've had an incredibly difficult time dealing with doctors who have just palmed the pain off as stress. Because my pain hasn't shown up in blood tests or scans, doctors don't take it seriously enough. They can't see how bad it really is and how ill I really feel. If medical professionals could see my pain and see how much it's affecting my life I think they would do more to find answers and adequate pain relief more quickly. I know that in the past I've always said that I'd much rather have an invisible illness, but I'm just so fed up with walking out of appointments feeling like I'm crazy. If doctors understood how icky I feel on the inside, I think they would treat me with more respect.

13. Regarding working and career: I am currently unemployed and am too ill to work. Before illness hit the plan was to get a degree in early childhood education and work as a kindergarten teacher. This long term dream only seems to be slipping further and further away from my grasp, which makes me sad, but I'm learning to devote my limited energy to new dreams - like becoming a published author one day.

14. People would be surprised to know: That Chronic Fatigue Syndrome is more than just fatigue. I can't blame them really when we have a stupid name for such a perplexing illness. Most people assume that this illness just makes you feel drained and lethargic and are surprised to find out that it causes so much more than extreme tiredness. CFS is a highly complex illness that causes immune dysfunction, muscle aches, sore joints, cognitive impairment, tender lymph nodes, insomnia (ironic, I know) and post exertional malaise, just to name a few. In my case I often feel like I have bricks tied to my hands and feet. In the last few years I've been struggling so much more with brain fog, i.e.: forgetfulness, difficulty to find the right word, trouble processing information and delayed recall. I sometimes feel nauseous and can get quite a sore throat, especially when I've pushed too hard and have overdone it.

15. The hardest thing to accept about my new reality has been: That there are no answers and these illnesses don't make any sense. This is something I've really been grappling with this year. There are so many theories and varying opinions out there as to what exactly causes illnesses like Fibromyalgia and Chronic Fatigue Syndrome, but nothing has been proven. The absurdity of it all is a really hard thing to accept. Just recently I sat in my Rheumatologist's office fighting back tears asking "but why?" It just seemed so stupid that no doctor could explain why I had suddenly developed a constant headache. I think if I had an answer for all of this absurdity, a reason for my pain; it would make it all a lot easier to deal with.

16. Something I never thought I could do with my illness that I did was: Exercise regularly. I decided to start Graded Exercise Therapy last year, and at first I was a little apprehensive as I was terrified that it would make me feel worse. Exercising seems so counterintuitve when you're feeling so damn lethargic and your muscles are aching. It's the last thing you feel like doing. But it is doable and it can be helpful as I've discovered. Exercising with chronic pain and fatigue is tricky business but with the help of an exercise physiologist, I've been exercising regularly for over a year now. Ok, so I'm not making leaps and bounds and my progress has been slower than a snail (I'm just walking slowly for 10 minutes a few times a week), but I am moving. And that's important. I'm improving muscle weakness, and I'm coping with the stress and depression a little better.
17. The commercials about my illness: Depict arthritis as being an old person's disease. There are so many different types of arthritis that young adults and children live with too.

18. Something I really miss doing since I was diagnosed is: Running. It was a huge part of my life before illness. It was the only thing that really helped me deal with stress. It made me feel like I could do and get through anything. The last time I went for a proper run was seven years ago. At present I'm only able to manage short bursts (usually 10 minutes) of low impact exercise like walking and swimming. Although it's been a long time since my last run, it's something I still miss a lot, especially this year. All the problems I've had (and am still having) trying to get this headache sorted makes me feel like going for a long run, and when I need to the most, I can't. It's really frustrating. Don't think that I'm not grateful for being able to walk though, because I really am. Thanks to chronic illness I don't take anything for granted anymore.

19. It was really hard to have to give up: My place at university studying early childhood education. But I know that God has something better for me.

20. A new hobby I have taken up since my diagnosis is: Blogging, card making and nail art. I'm so happy that I've found a few things that I can enjoy doing when pain and fatigue levels allow. These hobbies have helped me to appreciate the simple things more and have given me new dreams for my life.

21. If I could have one day of feeling normal again I would: Go for a good long run, obviously.
22. My illness has taught me: Not to take my health for granted and that there is always something to be thankful for.
23. Want to know a secret? One thing people say that gets under my skin is: "Everyone gets tired." Sigh. Facepalm. I'm not some stupid lazy wimp. "Regular" tired is no where near the same as "sick" tired. The indescribable exhaustion that I feel ALL THE TIME, EVERYDAY is not something that can be fixed by taking a Berocca, having a day off, getting a good night's sleep and drinking some coffee. Chronic Fatigue Syndrome is a debilitating, full on life altering illness which deserves more recognition and respect.

24. But I love it when people: Take the time out to give me a quick call or send me an email/text.

25. My favorite motto, scripture, quote that gets me through tough times is: "The pain you're feeling can't compare to the joy that's coming. Hold on." I'll explain why I love this in a future post.

26. When someone is diagnosed I’d like to tell them: It's ok to feel hopeless and it's ok to have an "it's not fair moment," just as long as you make an effort not to stay there permanently. Finding some new goals and dreams can be really helpful with the whole acceptance process. Don't let chronic illness stop you from dreaming, you can still do great things with your life.

27. Something that has surprised me about living with an illness is: How hard it is to get a diagnosis when new symptoms pop up.  I thought that getting a diagnosis for my headache would be easier given my chronic pain history and medications. I just expected that doctors would listen and take me seriously like they did when I first presented with problems back in 2007. Turns out if you already have multiple chronic illnesses, many doctors think you're just anxious and stressed. Most doctors I've seen care very little about the pain. One doctor even treated it like some joke. SIGH. Call me naive, but I guess I'm just surprised because up until now I haven't really had many negative experiences.

28. The nicest thing someone did for me when I wasn’t feeling well was: Surprised me with chocolate and flowers when I was getting used to a new medication earlier this year. Thanks mum!

29. I’m involved with Invisible Illness Week because: I am so passionate about encouraging people in pain and educating others on how they can help someone living with an illness that isn't obvious. It's important that people know they are not alone in their pain, and that there is hope.

30. The fact that you read this list makes me feel: Grateful. It's comforting to know that there are people who either really do understand or are trying to understand. I appreciate your support and encouragement very much.

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