Monday, 3 September 2012

30 things you may not know about my Invisible Illness

September 10th - 16th is National Invisible Chronic Illness Week
There are many things that people can do to get involved including blogging for the cause, uploading pictures of their 'visible hope' and obviously tweeting and sharing links on facebook. Its purpose is to generate awareness about all types of Invisible Chronic Illness.
During this week, between the 10th and 14th, there will also be a virtual conference where anyone can take part. For more information you can visit the website.
The '30 Things Meme' has been created so that us bloggers can share information about our daily life with others. It's there to help us be more compassionate to all of those around who are suffering in ways you may not have noticed. From reading other bloggers meme's I've found I have a lot more in common with other sufferers even if our illnesses are not the same.
Here's my '30 Things Meme'
1. The illness I live with is: Hypermobility Syndrome/ Elhers-Danlos Syndrome - Type 3 - Hypermobility
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: I was born
4. The biggest adjustment I’ve had to make is: Having to say no, mostly to social engagements and learning what my limits are. (I'm still learning!)
5. Most people assume: That I'm fine or better because i'm out and about and I don't look sick.
6. The hardest part about mornings are: The muscle cramps and constant aches. Having to pull myself out of bed and get my (very heavy) 8 month old fed, ready and to childcare and then myself to work. It's agonising when you feel like your legs are on fire and both back and hips are about to break.
7. My favorite medical TV show is: I don't really watch medical TV show but if I had to choose I would pick Supersize Superskinny
8. A gadget I couldn't live without is: My phone. Being connected with loved ones, social media sites, online support groups and my blog is what keeps me going. Especially if i'm having a particular bad pain day and stuck in bed. Texting and even holding the phone up can sometimes be strenuous but I wouldn't be without it.
9. The hardest part about nights are: Nights can go either one of two ways. Sometimes I'm that drowsy from meds I don't wake up when my baby crys and my partner has to do the 'night shift'. My pills can also have the adverse effect and I can be wide awake and hyper getting little sleep making me worse pain wise the next day. 
10. Each day I take _27_ pills & vitamins
11. Regarding alternative treatments I: have tried: Physio (no better from it), Massage (hurt more afterwards), Acupuncture (was told it would last a week - it lasted 2 hours), seen a Chiropractor (took about 3 month before I felt a small difference and went back to 'normal' as soon as I stopped going) and  to an Osteopath (AMAZING! But only for 24 hours and far too expensive to see every other day.)
12. If I had to choose between an invisible illness or visible I would choose: I think most people would answer this question by saying visible but i'd rather have an invisible illness. I can see their reasons why they'd say visible as in ''people wouldn't question their illness or disability'' but I'd rather appear to other people to as an equal and as able as they are, even if on the inside i'm broken. I don't think that the worlds view on illness and disabilities are where they should be and that discrimination unfortunately still exists. I obviously don't agree with this but I feel that ignorance is still a factor that needs to be tackled.  
13. Regarding working and career: I studied Music from a young age and eventually went to university and graduated with a BA Hons in Contemporary and Popular Music. Throughout my time at college and uni I worked at an entertainment venue and undertook a number of roles which I loved. After I graduated I secured a job at another entertainment venue as a Duty Manager. I love working in events and have done so for the last 8 years but i'm finding it increasing hard to keep up with the physical aspects of my role. My GP and Specialist have suggested to either give up work until I'm coping a bit better (not an option) or to find alternative work which isn't as physical and is more desk based. My employers have currently made reasonable adjustments so that I am able to stay in employment until I feel I am up to taking up my full duties again. I'm currently looking for alternative employment. I know that I could walk into a call centre job, there are so many being advertised in my area at the moment, but I do not want to walk away from the industry that I love working in. Since changes have been made at work my attendance has been faultless so I know I am able to cope with full time hours, I just need more regularity rather than constant shift changes and late nights at work and maybe a job based in the co-ordination or planning events instead of the management.
14. People would be surprised to know: I can't remember the last day that I was completely pain free.
15. The hardest thing to accept about my new reality has been: That my son will be an only child. I had such a hard and painful pregnancy due to my condition that in the end I was housebound unless someone came and took me out and pushed me around in a wheelchair. It was the worst pain i'd experienced even labour seemed easy after the months of pain. I had always wanted two children but I would never put my body through that again, not to mention that i'd be at higher risk of miscarriage, rupture of membranes, hemorrhaging and passing the illness onto the child. I obviously did not know all of this before I had my son who luckily isn't showing any of the early signs of the illness.
16. Something I never thought I could do with my illness that I did was: To be honest I try my hand at anything even if it does wear me out. I try to do the same as I did before I was diagnosed. Just a lot a less frequently and probably a lot slower.
17. The commercials about my illness: There are none.
18. Something I really miss doing since I was diagnosed is: Going out on nights out with the girls and dancing all night.
19. It was really hard to have to give up: Wearing high heels. I have so many gorgeous shoes that I can no longer wear. I'm holding on to them just in case.
20. A new hobby I have taken up since my diagnosis is: Writing this blog.
21. If I could have one day of feeling normal again I would: Dance, ice skate, go for a run (not that i'd get far) and a nice long walk in the lakes.
22. My illness has taught me: Not to judge others. 
23. Want to know a secret? One thing people say that gets under my skin is: 'So are you better now?' (I cant remember the last day when I was 'better'! This condition does not go away!) 'But you don't look sick' (Ok then, what does 'sick' look like?) 'What have you done to your foot?' (because I'm limping does not mean I have hurt my foot) Its a fluctuating condition, just because I look like i''m walking better or have more colour than other days does not mean i'm better. I could go on :(
24. But I love it when people: actually listen and are generally interested.
25. My favorite motto, scripture, quote that gets me through tough times is: I've never had a moto. Cuddles from my baby boy are all I need to get me through :)
26. When someone is diagnosed I’d like to tell them: Join the support groups online (HMSA and facebook). There are loads of people going through the same struggles as you and are willing to give friendly advice. If you need to rant, vent or chat about any illness related stuff they're great for all of that. It's great being able to talk to people who are going through the same especially if you have no one around you who fully understands.
27. Something that has surprised me about living with an illness is: How much ignorance there is towards people who are sick, especially those who have an invisible illness.
28. The nicest thing someone did for me when I wasn’t feeling well was: Just being there for me. Helping with household chores, looking after my baby when I can't, cooking for me, asking if I'm alright and if there's anything he can do. My husband does all this, I can't thank him enough. 
29. I’m involved with Invisible Illness Week because: There needs to be more awareness about invisible illness. Just because someone doesn't look sick doesn't mean that they aren't and the majority of people don't understand that. The more blogs that are wrote for this cause the better.
30. The fact that you read this list makes me feel: Heard. 

1 comment:

  1. I learned a lot from this about what you go through Stacey and even though I go through a lot of similar things it just shows that everyone is different and is affected by invisible illness in different ways. Thank you for sharing :)