It’s INVISIBLE ILLNESS AWARENESS WEEK!
As many of you know this is something very dear to me and very important to me, so any oppertunity to promote or educate people about invisible illnesses I will do so. So please take the time to read through it all and feel free to ask questions – however, this is my life and I do have to live with it so keep your criticism to yourself please.
30 Things About My Invisible Illness You May Not Know
1. The illness(es) I live with is: hypermobility syndrome (primarily knees, wrists, hands, neck, hips, shoulders), irritable bowel syndrome, rhinitis, migraines, asthma, depression/anxiety.
2. I was diagnosed with it in the year: Multiple years starting with asthma when I was 11, hypermobility when I was about 14 and the most recent was rhinitis about 2 years ago.
3. But I had symptoms since: Since birth? Hypermobility is genetic so I’ve always had it even if it didn’t show itself until I was in my teens. My asthma symptoms were all through childhood but it was only when my archaic childhood doctor left and I got a new GP that the possibility of asthma was even considered.
4. The biggest adjustment I’ve had to make is: Learning my limitations and living with them. It’s really easy to say ‘well of course you have limitations, you’re disabled!’ but the fact is it isn’t always easy to come to terms with it, especially if your illness progressed and worsens over time – or you have a condition which isn’t easily treated, therefore you suffer for a long time before someone finally is able to help you. I don’t have to just deal with one of my conditions, I have to deal with them all interacting which means I can’t just do things impulsively, I have to plan where I’m going, how and when and when I get there I need to scout out things like rest areas, lifts and toliets.
5. Most people assume: That I am a slacker, that I’m making stuff up or could ‘do more’ to work through ‘my issues’. People don’t understand chronic pain or depression until they’ve had it themselves.
6. The hardest part about mornings is: getting my body to do its thing – I need to let my tummy settle, my emotions get their act together, not to mention waking up and not feeling extremely fatigued. Sometimes pain and stiffness can be an issue as wall but usually meds sort that out. In the morning it is my tummy that is the biggest hurdle.
7. My favourite medical TV show is: House because it investigated a range of health problems rather than just being a typical/most known one. Ok, there was the ‘it’s lupus’ ongoing joke but the key words there are; ongoing joke. Most medical TV programs also focus on major issues or cancer, House had so many different things.
8. A gadget I couldn’t live without is: My laptop and my kindle; I can’t write for long periods of time or carry heavy things, so ebooks and having a laptop to use for lectures/classes is an important part of me furthering my education. I couldn’t have gotten through my 2nd degree and now my postgrad without it.
9. The hardest part about nights is: Getting comfortable and not stressing about not getting enough sleep. With all my health conditions it can take any one, or a combination of them, to make my nights difficult. I need at least 7-8 hours sleep and if I feel like I’m not going to get that I’ll start stressing about the next day.
10. Each day I take: As this is a public post to promote awareness I don’t feel comfortable listing my medication for all the world to see. So here’s a total of how many meds I take a day; 9 different medications every day with 4 optional, which is a total of a minimum of 17 tablets a day, plus 2 inhalers. Then there are extra non-prescription things like cold patches, massage oils, pain gels, nasal inhalers, vicks, heat pads/hot water bottles, ginger and lemon tea etc. which I will need to use multiple times a week.
11. Regarding alternative treatments I: I’ll use anything that will help me as long as it doesn’t badly interact with my medications. For this reason I don’t use homoeopathic remedies because I’m on so much meds, unless a doctor clears it.
12. If I had to choose between an invisible illness or visible I would choose: I honestly don’t think it matters – if it’s visible you still get ignorance and prejudice, it’s just aimed slightly differently. People still suffer and have to deal with things on a daily basis. Neither is better or worse – the most important thing about disabilities is that they are all important, it isn’t a competition. Just because someone can walk doesn’t mean they’re not in pain every single step of the way – something the UK government doesn’t seem to realise but that’s a different rant entirely!
13. Regarding working and career: I have 2 undergraduate degrees because after the first one I had to re-evaluate my career options. Most History of Art related jobs were either too physically intensive (on your feet a lot) or required fine motor skills that I no longer possess. Information and libraries is a sector which allows me to sit down, take my time and do things at my own pace using body parts that haven’t given up on me yet 😛
15. The hardest thing to accept about my new reality has been: Limitations as mentioned before (including future limitations such as being unable to pick up my future children), but also the fact that the UK government does not provide ANY support for young people who are in chronic pain/suffer from multiple conditions but can still walk/have all their limbs – some people have successfully fought and won, but they are a minority and it has been a hard/emotionally taxing fight. It is incredibly depressing and mind-numbingly lonely to realise no one can help you. I’ve had to go to a private physio to get the help I need to improve my life.
16. Something I never thought I could do with my illness that I did was: So much; finding someone who understands and supports me no matter what and wants to have a future with me, as well as completing 2 degrees and now working on a post grad and actually be able to consider a career in a field I love.
17. The commercials about my illness: Generally only IBS gets one.
18. Something I really miss doing since I was diagnosed is: Being able to explore nature. I love nature, I love animals and I’d love to just go out and hike through the countryside. I just can’t do it any more.
19. It was really hard to have to give up: My independence.
20. A new hobby I have taken up since my diagnosis is: Video games – I may not be able to go out and physically explore the world or jump from tall buildings, but I can explore and complete all different manner of things in video games. MMOs such as World of Warcraft have also allowed me to do this and meet an amazing bunch of people who have helped support me over the years. You guys know who you are <3
21. If I could have one day of feeling normal again I would: Honestly, I don’t know. I have never been truly “normal” by societies standards, I’ve always been a sickly child even before things got bad. As much as everything sucks the way it is, at least I am used to it and can cope with it – a day of no pain, no difficulties etc. would just make reality so depressing.
23. Want to know a secret? Invisible illness suffers can be happy, true, many suffer from depression (etc.) but if you had to deal with all this you’d be depressed too! But we can and do enjoy life, be happy, laugh, joke, mess around. We just have to fight harder for it and ya know, I think that means we appreciate it all the more for it.
24. But I love it when people: Ask me if I’m ok, if I need anything, generally actually recognise that every day I’m struggling, fighting an invisible battle. Also, if I fall over (which happens pretty damn often) don’t ignore me, or stare and laugh, help me up.
25. My favorite motto, scripture, quote that gets me through tough times is: I don’t really have one, it’s people, family and friends who care and support me that help me more than a motto.
26. When someone is diagnosed I’d like to tell them: I’m not going to lie; your life is going to change, it will be difficult but it isn’t the end. There is a light at the end of the tunnel and things will get better. You’re not alone.
27. Something that has surprised me about living with an illness is: Nothing positive to be honest, it’s more surprised me how horrible people can be. Especially people that suffer from invisible illnesses themselves; it’s not a competition, everyone’s suffering is valid.
28. The nicest thing someone did for me when I wasn’t feeling well was: It’s little things like emailing you class notes, sending you a treat or taking over your responsibilities so you can rest.
29. I’m involved with Invisible Illness Week because: this is an incredibly important subject for me and something that will be a part of my entire life. I always speak openly about my health because if I can get one person to listen, one person to learn something new about invisible illnesses it is totally worth it – or make a fellow spooney feel better and less alone, all worth it.
30. The fact that you read this list makes me feel: warm and tingly, and hoping you read it because you a) cared and b) wanted to know more about invisible illnesses rather than just being nosey to talk behind my back (yep I’m talking about you there).
If you have any questions please ask, I am always open to questions 🙂 You’re also welcome to share this as long as it’s to help others and not to mock or anything else negative.
If you own a website or blog consider showing your support of invisible awareness by joining my web clique ‘Fighting Everyday’ – http://cliques.ruby-wings.net/fight/