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:
 22-26
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.

(In)visible illness

So it's the very last day of Invisible Illness Awareness week. Nothing like leaving things until the last minute =]

I wanted to share with you a witty yet moving account of my experiences with visible and invisible illness, but last night's bout of painsomnia probably put pay to that. Suffice it to say, if what follows is actually understandable English (or really any language of any kind) we're chalking it up to a win, mmmk?

On the face of things I might not seem to have a lot to say on the subject of invisible illness, what with the wheelchair being a bit of a giveaway and everything, but it turns out I have a thought or two squirelled away for a rainy day.

Firstly, I (as with many others whose impairments/illnesses are now visible) lived with invisible illness for many years - in my case 10 years of invisible illness that had a significant impact on my day-to-day life (plus minor chronic health issues since the word 'go').

My invisible health conditions morphed over the years from fatigue + depression, to fatigue + fainting + joint pain / instability and as gradually more splints, meds and mobility aids came into the picture it all became more and more visible.

My second point is that although as a wheelchair user I am obviously disabled, I still consider myself to be living with invisible illness.

Part of this is because of the assumptions that people make about why people (especially young people) use wheelchairs. I get a lot of 'what happened to your legs?' or 'when was your accident'. People see me using my wheelchair and I assume that I can't walk - to the point of someone passing comment when I stand up at least once a day.

True, part of the reason I use my chair is because I can't walk very far at all, and because it is a wobbly and precarious experience - but I don't only use the chair because of my mobility.

I also use my wheelchair because of the pain that walking causes me, because of the dizziness and fatigue that standing causes, because of the poor muscle tone that makes sitting in other chairs without postural support absolutely exhausting. People don't see that when they look at me. Nor do they see the brainfog, nausea, insomnia, heat intolerance etc.

Also, when I'm not using my wheelchair (or my assortment of splints, sticks or monitors) I don't look visibly ill as long as I'm sitting or lying down. Unless you know what to look for that is (purple feet, strange contortions and transparent skin being some of my telltale signs to those in the know). In this way my illnesses are relatively invisible compared to someone living with a condition such as Down's Syndrome that can be fairly recognisable to the general public.

In some ways these distinctions don't really matter. There are comparative advantages and challenges to both invisible and visible illness/impairment. Chances are that most people you know will at some point have an invisible health condition - high blood pressure, depression, MS, endometriosis (yay! I can still remember 4 whole conditions after my year out) - you would think this would mean that we'd be better at expecting this.

Better at planning events to be intrinsically accessible rather than bolting access on at the end (and remembering that access =/= wheelchair accessible, even if there were such a thing as generically accessible to all wheelchair users). Better at asking people how they're doing and really taking the time to listen. Better at checking in with folks who've dropped off the radar and continuing to visit a sick friend in the hospital when they're still there 3 months after they were admitted. And, for what it's worth, better at talking about health, illness and disability without staring, pointing or asking 'what happened to your legs?'.
 
Chronic illness can be really isolating and complicated. When I was first ill, a lot of people didn't know and a lot of those who did found it awkward / difficult to talk about my mental health problems. That stigma made it hard for me to be open about my experiences. These days I think that my wheelchair sometimes creates a visible barrier between me and other young people who are not disabled. It is a constant reminder to them that my life is different to their experiences I think. I am very lucky to have a few close friends who know and care about all the health nonsense that's going on. They mostly have health issues of their own so we have a shorthand to a certain extent.

It's a strange thing, visible invisibility. Especially for those of us with rare diseases that most doctors couldn't spot. I was just wondering, really, if anyone else feels the same way?

Caught in the Middle

I spent 24 hours in the local surgical admissions unit this week getting some much needed IV fluids and continuing my search for the perfect anti-emetic.

I'd spent quite a lot of time on this ward during placement and I knew a couple of the junior doctors. The staff all knew that I was a medical student (every medical letter written about me begins 'this 24 year old medical student' but that's a whole other post) and so (curtains not being soundproof) did the other women in my ward.

In this way I am never just a patient, I am a patient that is a medical student. It comes with certain expectations - I will not complain when things are delayed because I know how chaotic it is to work a receiving shift, I won't go out for a cigarette with the others, I will be a good historian even at midnight when I'm really sick. From the outside those expectations look different I think - my roommates couldn't believe that as a medical student I wasn't given a private room for example.

In the same way, now I use the wheelchair and am in other ways visibly impaired I am never just a medical student. I am a medical student that is a patient. Some consultants think this gives them permission to ask me intrusive personal questions 'so what's wrong with you then?'. Others think that this will make me super-empathetic towards patients or that I chose to be a doctor because of my experiences as a patient.

There is overlap and divide between these two identities.

My experience as an acute patient was also very different to my roommates for another reason - they were otherwise pretty healthy. To them this was an acute episode of ill health which could be expected to resolve completely. To me it was an exacerbation of an existing condition, which had a knock-on effect on my other conditions. I couldn't take the first two medications suggested because they would interact with my other meds. The hospital could not cater to my complex dietary needs. I had to try and rest without the special cushions that I have at home to hold my joints in place overnight. Hospitals are not designed to care for patients with complex chronic conditions, with the possible exception of well-run care of the elderly units.

Our expectations of treatment were a lot different - they were expecting to be all better by the time they went home. I left as soon as my symptoms reached a level where I knew I could manage at home. When I told one of them that I had experienced moderate to severe nausea constantly for over a year now she was completely horrified.

I just don't know how to integrate my experiences. How to use my medical knowledge without irritating my doctors, how to treat patients better because of what I've learned from being sick. It is a work in progress and I imagine it always will be.

GP Chronicles

May I say again that my new GP rocks?

To those of you with competent GPs this post might seem really boring. It is just a summary of a GP appointment. I have never had a good GP before and I know a lot of folk who are disabled or living with chronic illness do not have a GP who understands how complex, exhausting and paperwork-laden that can be.

Today's appointment (because you are all desperate to know) was about my tummy meds. I've been on metoclopramide to increase my gastric emptying and was helping with the worst of the pain / nausea. Great, except that it was making me twitch/tremor all over the shop. It's been a month and I have a general rule with medications that I stick side effects out for a month if I possibly can to see if they'll die down (obviously, this is not always possible so you have to use common sense - when I tried trazodone ages ago it made me throw up every day for a week, so I stopped it then). For example, the first few days of taking this drug I had an awful taste in my mouth. I'd had it before and knew that within a week it should go, which it did. The twitches didn't and in fact have been getting worse, so lovely GP has taken me off them because of the risk of this being the start of a movement disorder. Metoclopramide is one of few options for gastroparesis/delayed gastric emptying that is now off the table. There was a good chance of this anyway, as a young woman but I'm a bit bummed anyway.

Then we had a discussion (yes, a real discussion where she listened to me and everything) about the relative benefits and risks of domperidone vs prochlorperazine. She went with prochlorperazine because domperidone has risk of similar movement disorders to metoclopramide (although the risk is much less). I pointed out that the endoscopy had confirmed her suspicions of delaye gastric emptying and that domperidone is a prokinetic. She went to make a prescription for domperidone but the computer told her that domperidone + amitriptyline risks prolonged QT (a dodgy heart rhythm that can be very bad) so as amitriptyline is very important for my pain management we decided maybe prochlorperazine would be better. The computer told her that prochlorperazine can increase the effects of amitriptyline and tramadol so she warned me it might make me super sleepy. So she double checked in the BNF to see if there was an alternative, which there wasn't.

She gave me with the prescription with instructions to stop the metoclopramide for a few days to let things settle, to give the prochloperazine a go and see how I get on with it and a warning to come back if my twitches don't resolve when I stop the metoclopramide. She also said that she's not ruling domperidone out, but that we would have to figure out how to use it safely if that becomes necessary.

I left promising to tell my body to behave better for next time and she laughed.

----

Does this all sound normal to you? If you'd told me a year ago I could leave a GP appointment not wanting to cry I wouldn't have believed you. To have a GP who smiles when she sees me, takes me seriously, asks my opinion and listens to it, has a good idea of my knowledge base (so didn't need to explain long QT but did tell me the more common name for prochlorperazine, stemetil) warns me about medication side effects, tells me to come back if I need to and laughs with me is nothing short of incredible. Since I changed GPs I have had 3 consultant referrals, support for DLA, blue badge and DSA applications and have made some actual progress in managing all the bendiness. I feel very, very lucky.

Hope

I am not having a good day. My tummy's been asleep the last couple of days so I've been nauseated, and none of my meds seem to have been absorbing (which won't be helping the stomach either) so I'm in a lot of pain of one kind and another and a bit fed up.

It's verging on that tunnel-vision can't be distracted from, can't do anything else, feels like it will never end kind of pain/nausea. It shakes my confidence in my ability to manage my condition. It makes it hard to remember that life is not always this way and that at some point in a few days or a few weeks it will hopefully get a bit better, as it has done before. It makes me think that there is no way I am ever going to get back to uni, because there is no way I could study / work feeling the way I do today.

I know that this is probably just payback for a couple of weeks of busy days and being a bit lax on my tummy friendly diet plan over the (not)wedding/honeymoon, or to do with the anxiety surfacing around my driving test / everything that needs to get done before I get back to uni, or another infection like the bronchitis I had a few weeks back. I know that one or all of these has triggered this flare and that it will ease, but I'm scared that it won't. I get scared every time that I won't recover. I have found as well that each flare has residue - they all leave things a little or a lot worse than before. So I'm lying here wondering what's going to be different now.

So much so negative. I feel like I should apologise. I know it can be hard to stay positive when you feel like others are dragging you down, so I'm sorry if this is too much negativity. I know that other folk, including other folk who will read this have much more to deal with right now that me.

There's obviously a lot of great stuff going on for me at the moment and I am thankful for all of it. I should say that. The good and the bad are running in parallel like they always do.

This was supposed to be about hope though, so I will get round to that. Chronic illness brings its fair share of bad days. I find that it helps to accept that and be prepared for days when you feel hopeless. I have a stack of books / kindle list of books that make me feel better - either funny things or books about mindfulness (for example How to be Sick which I read on honeymoon and highly recommend). I have several playlists depending on which breed of bad day I'm in - angry music, weepy music, gentlyacousticyhappy music. I have a bad day box full of distractions - games, bubbles, felting and card-making supplies.

Most important to me is a small black notebook which I call my 'bad day book'. I started this book in the middle of a severe depressive episode / fatigue flare and am still adding to it. It is full of quotes - some cheesy'n'inspirational, some from the Bible, some from books I have read on mindfulness or recovery, some silly poems. After I've finished this post I'm going to write the vows we used at our blessing in to it. The aim was to have a book full of gentle, hopeful, positive words that have meant something to me during previous bad times, to keep me going. On bad days I read those words, sometimes I draw pictures to go with them or add new quotes in. It helps a little. Often helps me to identify the particular emotion - fear or grief or anger - that is contributing to a bad mood.

One of the readings we used at the blessing (found here) includes this :
"And in the moments – because they will come –
when...the story of love feels like it has no words left to be told,
may the silence that stretches before us
be filled with the faith
of the echo
of the memory
of the love
spoken into the world
before all time began."

Sometimes that's what bad days feel like 'the faith, of the echo, of the memory, of hope'. A tiny whisper of hope is enough to keep you going.

Thoughts in the Run Up to My (Not) Wedding

I'm getting married on Saturday.

Well.

I'm having a Civil Partnership on Thursday, and then a blessing in a Christian church on Saturday which will be the bit that looks like a traditional wedding - the bit that our family and friends are invited to.

I've been thinking about it a lot. About marriage equality, about privilege, about my life and how it might change.

Firstly, I'm in love, I'm excited to celebrate our relationship, to see our friends and family and to share with them, to use the beautiful liturgy we've put together and to sing some of my favourite hymns, to eat the delicious food, to do a bit of dancing in my swishy dress and decorated wheelchair and then to escape with my wife (sorry, getting carried away again, most civil of partners) for a few days to a wee B and B for a holiday from all this planning!

We live in a country where it is possible for us to have most of the legal rights of a married couple, our close family have been broadly supportive of our partnership, we have the acceptance of some members of our religious group - by no means all - and we can have a religious ceremony - if not in our own church. We are monogamous in a society where polyamorous relationships are often misunderstood and are not easily afforded the same legal protections we will enjoy. We are both white, we are both young, we are both university educated.

I'm really aware that people will notice and think about my impairment in the context of the wedding. People will think that I'm lucky Beanie chose me, that she stayed even when my body fell apart. We deliberately omited 'in sickness and in health' or variants thereof from the vows. She will never have me in health, not in the way that that statement was intended. I can't bear the knowledge that many people think she is foolish for doing this - foolish for shackling herself to someone who has so many needs and so little earning potential.

She can't stand it either. She is exciting about pooling our resources in 'tiny communism' as she's taken to calling it. She will always earn more than me, but we will go into this as equals - both contributing to the pot what we have - wages, benefits, time, energy, passion, compassion - and both taking out what we need.

My partner identifies as a queer lesbian, I identify as queer in both gender and sexuality (and for me it ties in with my disabled identity), although I also identify as female. We are most frequently seen as a cis lesbian couple in a society that invisibilises bi and pansexuality, asexuality, trans* and genderqueer identity (as well as many other gender and sexual identities). We've tried not to use language that excludes anyone in our liturgy, as we have been excluded by the language of so many wedding ceremonies.

 I know that I will need to pace a lot over the weekend, conserve energy so that I can be fully present for the important bits. I also know that there's a lot to do and that Beanie's bad at delegating. I also know that I am incredibly sensitive to being called lazy (to the point that it's called 'the L word' in our home). Need to explain to my mother why lying flat is infinitely easier than sitting is infinitely easier than standing.

We are both children of divorced parents. No top table for us (never relished the thought of a room full of people watching me eating anyway). I have noticed that everyone is trying to be graceful while we try to work out any potential problems.

I do not like to use a title. If I have the option not to use one I won't, if I have to and it's Miss/Mrs then I'll use Miss. Now Ms is more available I choose that. There is no title that I feel drawn to -  I love the gender neutral Mx (Mixter), but I don't feel a personal connection to it. I have to decide what title to put on my official documents this week. I guess Ms, but I really don't want anything. When I graduate, at least Dr is gender neutral, but to use it for non medical things feels somehow elitist. I'd just rather not use one.

I've loved these past few months of planning - choosing vows leading to discussions about what we actually promise to each other, inviting guests and getting in touch with people we haven't seen in a long time, listening to gorgeous music and shaping a future.

We're serving vegan food, with gluten free and nut free options. There's stuff that is tummy friendly for me and plenty for guests with dietary requirements that would normally mean a 'special' meal. We've also tried to choose food that folk used to 'meat and two veg' won't find too alienating. I'm worried that if I have a bad tummy day I won't be able to eat with everyone else. That would be very hard I think - although food is far from the point of the day.

We're trying to not exclude any of our guests. Food choices are one example. The ceilidh band are doing 'bread and butter' calling (this is when they use 'bread and butter' instead of 'men and women', which is more inclusive of queer couples etc). They are also calling a couple of sets for the wheelies. We're having a quiet room for folk to rest / escape from the music / take meds. We've provided a timetable beforehand to allow folk to prepare. There will be large print and non black on white orders of service. This is not 'extra' preparation, it's intrinsic to the preparation. 'What is the most inclusive way we can do this?' I'm sure we will make mistakes and I hope for the wisdom to recognise them and the grace to apologise.

We are already married. To us this ceremony is a celebration of a transition that has happened and will continue to happen. That the word 'married' in this context is controversial makes me angry. I find it hard to be measured on this topic because I think that people who spend a lot of energy talking about why I should not be in love could be putting it to much better things. I also do not believe that I should accept discrimination, but I'll love the sinner (as it were).

I've been scolded so much this week for hoping that the weather improves (that the temperature goes down). I guess I must seem like a killjoy to people whose resting heart rate isn't currently in the 120s. I don't want to collapse on my (not) wedding day. Mainly because I don't want to worry folk than because it's a particularly big deal.

Neither of us have particularly socially acceptable bodies. I have a belly and a bottom and body hair. I have lots of scars. My joints don't behave and I have spots. I chose the dress that I loved, that makes me look and feel amazing - it was one of the first times I've chosen an item of clothing focusing on how it makes me feel rather than what it hides. It feels good (but I'm still a bit worried people, read : my mother, will think I'm trying to make a statement).

Speaking of making a statement : the aisle I can walk that distance, but it hurts. I would rather wheel, but I'm worried that people will read into that decision. It will also be the first time a lot of the guests will have seen me using the chair.

These are the things that whirl through my head with 2-4 days to go. These and all the other thoughts I haven't noticed yet, or aren't coherent enough to be written down. I wonder what it will be like to be a (not) bride in a society with such a fixed impression of what that means - but maybe that's another post all together.

Lots of (Good) News

I thought we could do with a little positivity after my previous overwhelmed and gloomy post. In bullet point form :

- My communication cards arrived. I haven't had to use them yet (typically).
- I got my discretionary blue badge.
- To celebrate I got a pretty holder for my blue badge which arrived super quickly in the company of the radar key* I'd never quite got round to ordering before.
- The next day my DLA letter arrived - I got high rate mobility and mid rate care as I hoped. I was expecting to have to go all the way to tribunal so that was a welcome surprise. The awards are indefinite, which for me will probably mean until I'm assessed to transfer to PIP at which point anything could happen.
- This means that I can apply for a motability car. I can't tell you how much of a relief that is. My driving test is coming up pretty soon so I'm hoping that this run of positivity will extend that far!
- The payments get backdated to when I got the form in February which means that I can afford a couple of impairment related things (such as an exercise bike to maintain muscle tone in my legs) that I couldn't afford before.
- I had a cardiology appointment yesterday. This would not normally be good news. I asked him about my diagnosis and we had quite a useful conversation, the upshot of which was that I have autonomic dysfunction (quelle surprise) which 'seems to be more the POTS than the bradys and the vasovagal' (and I quote). He is king of vague and his English is not great, but in short I have (the) POTS. As with every diagnosis it's bittersweet - yay I know what the incurable chronic illness I have is called. Tis a step in the right direction anyhow.
- And best of all, my civil partnership is one week tomorrow and the blessing is two days after that. Exciting!

I feel a little guilty because I know that a lot of you are not having a good time of it right now, but equally I know that noone recognises the importance of enjoying the good times like folk who have more bad days than most. So for now I'm enjoying good fortune, keeping out of the heat (DLA backpay meant that I could buy a decent fan to stop me collapsing several times a day every time the temperature goes over 20 degrees) and resting up before the big day(s) (long weekend really).


*Radar keys unlock disabled toilets signed up to the radar scheme (in a lot of public places like stations and shops the toilets are locked to stop people trashing the place etc. This is good because I'll stop having to go round the houses to find the person who knows where the key is, but I don't like the system at all. Well, rather, I don't like that it has to exist, as in I don't like that disabled toilets are locked. But that's another post.