30 Things About My Invisible Illness, for Invisible Illness Awareness week.

As it is Invisible Illness Awareness Week i thought i would fill in this wee questionnaire.  Many people fill them in and it’s basically to give an overview of what it’s like having an invisible illness and some of the things we would like you to know. I hope it is helpful and spreads awareness.

1. The illness i live with is: Hypermobility Syndrome (possibly Ehlers Danlos Syndrome type 3) with secondary Postural Orthostatic Tachycardia Syndrome (POTS). I also struggle with anxiety.

2. I was diagnosed with it in the year: 2013 for HMS and just very recently for POTS.

3. But i had symptoms since: forever? I have had signs of HMS my whole life with hypermobile joints and translucent, fragile skin but they never caused me problems.  I started getting migraines and dizziness when i was 13 along with bone pain.  I didn’t get serious symptoms until 2012 when i hadn’t long started working at Teen Ranch. These were the symptoms that launched the investigation and search for diagnosis. I had depression and anxiety as a teenager and now don’t struggle with depression but do still have anxiety problems so that would be since i was 14.

4. The biggest adjustment i’ve had to make is: not working at my dream job.  It literally breaks my heart that i can’t live and work where i love.

5. Most people assume: I am young and slim so must be healthy.

6. The hardest part about mornings are: sitting up, and then standing up.  After so long lying down my body finds it hard to adjust to the postural change and i get extreme pain and dizziness.

7. My favourite medical tv show is: House for sure.  I also watch real life fly on the wall type medical shows, they’re great.

8. A gadget i couldn’t live without is: um, my water bottle? I don’t really rely on any gadgets.  I appreciate them and use them but could live without them easily.

9. The hardest part about nights are: deciding if i’m going to not be able to sleep from the pain or if i’m going to have insomnia induced by my pain killers.

10. Each day i take the following pills and vitamins (no comment please): Lansoprazole for acid reflux, nifedipine for raynauds, gabapentin to help with pain. I also take ibuprofen, paracetamol, co-codamol and tramadol when required for pain.   I often drink berocca for a boost of vitamins.

11. Regarding alternative treatments: I am open to trying them but i need to thoroughly research them first and decide if they have any firm grounding.  I have tried aromatherapy and massage and found them useful for relaxation and mental health.

12. If i had to choose between an invisible illness and a visible i would choose: invisible. Though it is hard to not have people believe or understand me i hugely appreciate being able to look nice and appear “normal” when i choose to.

13. Regarding working and career: I am currently receiving ESA which is because i am unable to work a normal job due to my illness.  I am permitted with this benefit to do a small amount of work which is good because i am able to earn a little extra and also keep myself active and entertained.  I do pet sitting and have a regular puppy client and do occasional small animal boarding.

14. People would be surprised to know: my heart rate regularly jumps up 50 beats just from moving from sitting to standing and that this has become normal to me.  I don’t really know what it’s like to not feel dizzy and tired when standing up.

15. The hardest thing to accept about my new reality has been: knowing that i have this condition for life.  Not knowing how it will affect my future plans and if it will get better or worse. Relying on other people will be essential my whole life.

16. Something i never thought i could do with my illness that i did was: start a pet sitting business.

17. The commercials about my illness: don’t exist.

18. Something i really miss doing since i was diagnosed is: working with horses, playing basketball, running, hiking, horse riding regularly

19. It was really hard to give up: living and working at Teen Ranch.

20. A new hobby i have taken up since my diagnosis is: doing more sewing and reading.

21. If i could have one day of feeling normal again i would: climb a mountain then run down it to meet a horse and go on a long hack. Then make a big dinner for my family and friends and stay up late singing and dancing.

22. My illness has taught me: that so many people deal with chronic illness that you don’t realise until you do too.  We are all fragile and it is important to be able to change your dreams to fit your reality.

23. Want to know a secret? One thing people say that gets under my skin is: “Aw that’s a shame” with a big sad face on and a patronising pat.

24. But i love it when people: actually listen to me. Ask how they can help. Say they appreciate what i’ve done and how hard it was for me.

25. A scripture that gets me through tough times is: “Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving make your requests be made known to God, and the peace of God which surpasses all understanding will guard your heart and mind in Christ Jesus our Lord.” I think that’s it, can’t remember the reference, possibly Philippians.

26. When someone is diagnosed i’d like to tell them: join in with groups of people with the same diagnosis on social media.  Don’t be afraid to tell people how you feel. There is always someone there to support you if you need them.

27. Something that has surprised me about living with an illness is: how much of my life it overtakes.  How i can’t stop thinking about it and how everything i do might affect it and how i have to plan my life around it.  It’s like having a child.

28. The nicest thing someone did for me when i wasn’t feeling well was: eat soup with me on my bed, have a deep conversation, pray for me and cheer me up.

29. I’m involved with invisible illness week because: so many people suffer and i think it’s about time we talk more openly about it.

30. The fact that you read this list makes me feel: worried about what you might think but also glad that you might have more understanding.

Raising Awareness! Through dog walking.

I have been pet sitting for a little 14 week old cocker spaniel called Reba for the past month and i have really enjoyed the sense of purpose it has given me.  There are days when i would usually not get out of bed thinking i was too ill but now the thought of having to rearrange cover for Reba and phone all these people ends up seeming more taxing than just getting out of bed and doing it.  Don’t get me wrong, some days i literally cannot get out of bed but they are much fewer now i have a purpose for my day.  I noticed this a couple of weeks ago and have felt pretty good that this little job was actually doing my illness and my mental health more good than harm which other jobs always fail to do and have been telling people that’s the main reason i have this job.  Which it is, but it turns out there may be another side to it as well.

As it was a lovely sunny day today with a cool breeze i decided to take Reba to Eglintoun Park which is a big country park great for dog walking just a short drive from her house.  I usually wouldn’t be able to take her on such a long walk but i was feeling up to the challenge.   Half way round our walk we met a lovely lady and a border collie called Jack.  Jack and Reba seemed to hit it off pretty well so the lady ( i never did ask her name) and I got to chatting.  I was explaining to her how i pet sit as a small job because i can’t work a normal job due to a chronic illness and she asked me what it was.  It turns out she has fibromyalgia and endometriosis so she was very interested to learn of a chronic illness she hadn’t heard of.  I explained to her about hypermobility syndrome and POTS and we discussed how people perceive us folks with invisible illnesses.  She told me that if we hadn’t stopped and talked for so long she never would’ve realised there was anything wrong with me as i look so young, fit and healthy.  I said the same back.  We got to chatting about other things to like my sister with cystic fibrosis and her son with tourettes and both of us with anxiety and depression and realised how many people suffer from chronic and invisible illnesses.  It was a really nice chat and it felt good to spread awareness of HMS and POTS and maybe she will be able to use the information to spread further awareness and maybe help someone who doesn’t know they have it.

The whole conversation left me with a very good feeling of being open about these invisible things in our lives.  I never usually talk about my illness to anyone really never mind strangers but lately i have been mentioning it in conversation and i always get a very nice response.  People are often shocked but always very positive and have stories to tell of their own illness or that of a family member.  There are so many people with chronic illnesses that probably every person you meet will know someone with one.  I have surprised myself with how confident i have been in these discussions and i guess it’s just because it’s something i have researched and know a lot about.  It’s like when people ask me about animals, i go off on a mad tangent and have to remind myself to stop talking.  I hope that i will continue to be open about my illness and also open to helping others with theirs.  I’m practicing my conversation skills as if i were a young teenager because i never talked much when i actually was one due to anxiety.  I hope i can become a caring person that people can rely on.  It seems that people are never scared to talk to me, probably because i look so young and i’m so small and unintimidating.  I really want to continue to raise awareness of not only my illnesses but invisible illnesses in general and it seems i have a great platform to do it, through mutual love of dogs.

SarahRose x

Reba