Sunday 23 September 2012

More on In/visibility

After my last post I found this Invisible Illness questionnaire. I found other people's answers really interesting, so I wanted to have a go! It's quite long, so feel free to skip it =] (For a discussion of the fact that I consider my conditions both visible and invisible, see previous blog post)

First though I wanted to say a huge thank you to one of my friends who reads this blog. Yesterday she had us round for dinner and made a FEAST that encompassed all my foody complicatedness (and indeed her own), which made me feel very loved. And it was DELICIOUS.

1. The illness I live with is :
Ehlers-Danlos Syndrome Hypermobility Type (H-EDS) aka Hypermobility Syndrome (HMS) and
Postural Orthostatic Tachycardic Syndrome (POTS) a type of Dysautonomia
Gastroparesis (GP) aka Delayed Gastric Emptying a type of Dysmotility
which are really just more side effects of EDSy collagen.
(and other bits and bobs that are not so relevant)

2. I was diagnosed with it in:
January 2011 (HEDS/HMS)
May 2012 (POTS)
May 2012 (GP)

3. But I have had symptoms since:
Symptoms since birth, became significant aged 12 or so, which would be 2000ish (HEDS/HMS).
Symptoms blend with HEDS/HMS to some extent, but obvious problems (fainting, etc) started in 2008ish (POTS).
Had periods of gastro problems since aged 10, but current issues started in July 2011 (GP).

4. The biggest adjustment:
Difficult question because it has been so gradual - I think my answer would be very different if I'd gone from perfectly healthy to my current state overnight. Maybe the loss of spontaneity - I can't pop to the supermarket or drop in on someone or book a last minute getaway - everything requires extra planning, pacing, paperwork. Since diagnosis, the biggest adjustment has been learning to listen to my body rather than writing myself off as lazy and forcing myself through.

5. Most people assume:
That because I use a wheelchair I can't walk at all and that because I look otherwise well, I'm not ill. Hence "What happened to your legs?" or "Were you in an accident?"

6. The hardest part about mornings are:
the thick-as-treacle fatigue caused by my blood pressure being in my boots overnight and dislocations/subluxes in my sleep meaning I never properly drop off. Coffee is my friend.

7. My Symptoms:
HEDS/HMS - acute pain from subluxations/dislocations, chronic pain from nerves getting irritated about being bashed around in the process, chronic fatigue from working so hard to stop my joints from falling apart, rubbish proprioception which makes me drop things and fall over and healing sllllowwwwlllyyy
POTS - orthostatic intolerance (which means as soon as I stand up all I can think about is sitting down, until I pass out),  corpse feet (technical term describing the purple, mottled and swollen nature of my lower appendages), another helping of fatigue and brainfog
GP - nausea is the main symptom, possibly my least favourite of all - also abdo pain and vomiting

8. A gadget I couldn’t live without is:
My laptop (internet access + TV/film distraction). My wheelchair. The microwave.

9. The hardest part about nights are:
Used to be insomnia. Amitriptyline is my wonder drug. Now mostly that when I get up to go to the loo I forget in my grogginess how clumsy and fainty I am and frequently end up face planting.

10. Tablets a day:
I keep them in my awesome rainbow pillboxes =]
11. Regarding alternative treatments:Depends what you mean by 'alternative'. I'll just give you an idea of my non-drug treatment.
- Pacing of activity and scheduled periods of rest
- The 'GP friendly' diet I follow
- Using the wheelchair helps with pain, fatigue and falls
- My microwave wheatbag is my best friend
- Journalling and mindfulness-based symptom management
- Compression stockings (I even have a bright purple pair from here!)
- Self-administered physio (at the moment focusing on shoulder stability and core strength)
- Increased salt and liquid intake for POTS (10-20g and 3-4l respectively)
- Splinting and taping joints
- Ginger sweets are fantastic for nausea

12. If I had to choose between an invisible illness or visible I would choose:
Hard to say. I think that no impairments/illnesses are truly visible. You may be able to tell from someone's appearance or the equipment they use that they are disabled, but you are never able to tell exactly how this affects them or what their access needs are. To me chronic illness/impairment as isolating whether visible or invisible. The day-to-day frustrations are just a bit different (e.g. not being offered a seat on the bus vs. being expected to explain your health issues to anyone who asks).

13. Regarding working and career: 
I am a medical student. I love the medicine and hate the disability-related nonsense involved in every single step of medical school. I would like to work in a hospital-based medical speciality but haven't decided which one. I like working with kids and older people. I am interested in the coordination of medical services for folk with complex chronic illness, especially young people, those at the transition between paediatric and adult services, and management of acute sickness in those with chronic illness.

14. People would be surprised to know: 
It is not much easier to navigate the NHS as a patient because of my medical training. I still struggle with being assertive, I still get messed around by doctors. I have no regular consultant follow-up, no physio, no treatment for POTS or GP. I still don't know how to deal with it when I know more about my condition than the doctor I am talking to, especially when the doctor is telling me I am wrong.

15. The hardest thing to accept about my new reality has been: 
The logistical nightmare of needing a lot of medical and social support. The paperwork, the endless phonecalls, needing a GP letter to confirm everything I ever say about myself, waiting lists, assessments and more paperwork. Having to be polite to people who've really screwed up because they are the gateway to the services that I need. Being made to feel like I am asking for ridiculously extravagant things, rather than help to wash and dress myself and to put food on the table.

When you have limited energy your capacity for nonsense is dramatically reduced.

16. Something I never thought I could do with my illness that I did was: 
 I don't know! Learning to drive I guess, although I haven't passed my test.

17. The commercials about my illness: 
None of them are well known or well funded enough to have them. I like to think they would be drawn by Stickman Hannah though (that is her official title).

18. Something I really miss doing since I was diagnosed is: 
Wandering. I can't walk far at all and I can't self-propel far outside. One day when I have a powerchair I will be able to wander again, and I can't wait!

19. It was really hard to have to give up: 
There is little that I have had to give up outright. There is a lot that I have had to significantly cut back on.

I shower once a week, not every day (used to be my way of winding down in the evening, now it's something I dread). Can only play my cello, or sing for a few minutes on a good day (practiced cello 2-4 hours a day as a teenager). I can have one sip of alcohol, but no more and I'm on a very restricted diet (vegan, gluten free, low fat, low fibre).

I can't do anything without being conscious of pacing and of how my body is feeling. Being spontaneous and relatively carefree was hard to lose.

20. A new hobby I have taken up since my diagnosis is: 
Crochet. It's a great activity for downtime as long as I rest my wrists regularly.

21. If I could have one day of feeling normal again:

I would probably go for a walk with Beanie and my dad - with a football to kick around as we go (me and my dad used to do this when I was a teenager), have a leisurely lunch, wander through my favourite bit of the city where they have all the craft and foodie shops, then cook dinner for my friends. Nothing complicated.

22. My illness has taught me:   
to listen to my body, to stand up for myself, to relax and rest, the importance of a good GP, which of my friends I can really trust and how interdependent human beings are.

23. Want to know a secret:
I have never really wished to get better. I have wished many, many times for much better health and social care.

24. But I love it when people:
Ask what I need from them and then listen when I answer. Call or text to see how I'm doing. Come and visit me at home when I can't get out and then don't comment on the messy flat or me being in my PJs. Remember my access needs when planning get togethers, or check my needs with me.

25. My favourite motto, scripture, quote that gets me through tough times is:
Life is not about waiting for the storm to pass - it's about learning to dance in the rain - Vivanne Grenne

26. When someone is diagnosed I’d like to tell them:
If you have been told for years that you are imagining things or exagerrating, it will take time to learn to trust your body again. Use the internet sensibly - sharing experiences can make you feel less alone, but you have to remember that everyone's experience of these conditions is different - don't scare yourself with the horrow stories of the worst-affected people when your symptoms are relatively mild. Find a GP who listens to you and is willing to learn about your condition and advocate for you. Practice being assertive - it will be one of the most useful skills you learn. Learn to rest and to enjoy caring for your body, rather than feeling guilty about it.

27. Something that has surprised me about living with an illness is:
How much paperwork there is. How weird people get about illness/disability. How badly coordinated healthcare is for folk with complex chronic illness and how difficult it is to access social care services as a young person.

28. The nicest thing someone did for me when I wasn’t feeling well was:
 So many things. The day A came straight from work in one hospital to sit with me in A/E at another when I was waiting to be admitted and Beanie was still at work. S who lies down on the floor and cuddles me when I faint, until I come round. And of course Beanie, who cooks for me, nukes my wheatbag tirelessly, goes to fetch me medicine, strokes my back while I puke and refuses to let me take myself too seriously.

29. The fact that you read this list makes me feel:
like you must be nearly as good a procrastinator as me ;)

30. Something I want people to take away from this:  
Chronic illness is a difficult path to navigate alone. If you are ill, you will need to find peace with the fact that you need to rely on others more (as everyone does in some way). You will need to learn to be assertive and to listen to your body. If you have a friend who is ill, keep in touch with them - a lot of friends will drift away, don't be one of them.


  1. Some excellent advice here, but you also helped me remember this evening's tablets - half an hour late, but better than never!

  2. "29. The fact that you read this list makes me feel:
    like you must be nearly as good a procrastinator as me ;) "

    You speak the truth.
    *super gentle fistbump of solidarity from one procrastinating bendy to another*

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