Dating with a disability

So I'm just going to brush over the fact that I disappeared for a few months. A lot happened in the time and I can't really be bothered to go into it but one thing you do need to know is that I became single in this period (and um...not single again.)

And thus I entered the modern dating world as someone with a disability, with definitely more complications than when I was last single (4 years ago) and now using a wheelchair on a regular basis. 

I downloaded a dating app (no, not tinder) and started writing the blurb about myself (constantly on whatsapp getting my friend to check through everything, thanks Steph!) when I realised I had to make a decision. Do I write about being disabled or not? I didn't want to go on about it, but I thought it would make it so much harder to explain later down the line if I didn't even mention it. So I decided to say that I was a part-time wheelchair user. That was all, no sob story or gory details, just the fact that I use a wheelchair. If that puts someone off then I don't want to meet them anyway. 

Now of course, people asked questions about it. So again I had to make the decision of how much to divulge, the last thing I want from somebody who I'm thinking about dating is for them to feel sorry for me, to pity me. I made the decision to be totally honest about my condition, but without any of the emotion involved. I explained I had to use a wheelchair because I have a condition that causes pain and fatigue, with the (not so) occasional dislocation. I tried not to go on about it, but explain my issues and to be as matter as fact as possible. And you know what? I'm so bloody pleased I did warn people. It meant when I got tired after less than 2 hours in the pub, my date understood that I had to go home.

More importantly it means that my new boyfriend didn't seem too phased when I had to spend our first morning together lying down because my blood pressure was non existent and I couldn't even sit up without feeling like I would be sick or faint (Or when he woke up to me crying in pain in the middle of the night, or even when I asked for a smaller glass of water because I find it difficult to hold a pint glass). I explained what was happening and we spent the morning with me lying down with my legs up (no, not like that!) chatting away. It was a bloody brilliant. Even though I felt like crap half the time, I vomited and I did apologise profusely, I felt pretty secure in the fact that he knew what he was getting in for. And if that's not a baptism of fire I don't know what is! 

I'm a pretty open person (shocking really considering I write a public blog about some of the hardest things in my life!) but I can't imagine trying to hide my disabilities. It is something that affects every part of my life. 

Opening yourself up in the dating world is hard. I'm not a game player, but of course I understand that there are times when we need to hold back a bit. I just don't think something as big as being disabled should be one of those things. 

With hundreds of people now available at the touch of your phone screen, the dating world has definitely changed. It's so easy to think that someone better is just a swipe away. This makes opening up about a disability even harder, what if that's the reason somebody doesn't start talking to me? Well to be honest, to those people I say (and excuse my language but I do think it's most appropriate) Fuck You. It's hard enough learning to accept your own disability, you definitely don't need to have to counsel somebody else about it too. The last thing anybody needs from a relationship is to have their awareness of their limitations heightened by somebody else's inability to empathize.

So the conclusion to this blog post?

I say be loud and proud about your disabilities. They have helped to shape the person you are now, they are an intrinsic part of you for which you do not need to apologize (which I know is much easier said than done). I'm not saying use a hospital photo as your profile picture, but don't hide a part of you that affects your every day. Tell someone if a country walk is out of your reach, or that you can only meet for an hour because you get too tired. Explain that you can get anxious and maybe a busy environment isn't the best for you. Or you know, spend your first morning together unable to stand or even sit up! This is your life, the good ones will be fine with it. 

Learning to take control

I'm currently sat in my patio in the sunshine*, getting very excited about the arrival of spring. I really don't think there is any better therapy than a good dose of vitamin D, everything seems easier to cope with when the sun is shining. 

I find winter very difficult. Historically it has been the period of time where I have (for want of a better phrase) lost it. Christmas has for years been synonymous with a flare up and the feeling of losing my mind, so it's been pretty fucking amazing that this (last) year that didn't happen. In fact I've been on a very even keel the whole of winter. 

For years people have told me that I need to take control of my life, and not allow my illness to do so. I've found this a very difficult pill to swallow. I could not understand how I was supposed to have any semblance of control of a body that had a mind of its own. I didn't know how I would feel from one day to the next. I couldn't make plans because I'd have to cancel two out of three and nobody knew what was wrong with me. I saw countless therapists and doctors (including the wonderful osteopath who originally noticed my quite extreme hyper mobility). We thought I would get better, I was just waiting to be able to start my life again. That was, until my diagnosis.

I think I am finally understanding what it is to take control of my life, warts and all. I don't think I could do this before my diagnosis. When I thought that I could get better and never have to worry about things again, my focus was on the end goal. I had the idea that if I could just work hard enough, all would be sorted and I could go back to being me, pick up where I left off.

Diagnosis has thwarted that hope that I will magically get better. At first I felt like I'd be handed a life sentence. I'd known for a while that I was probably never going to fully recover, but it's quite a different thing having that confirmed by a specialist, partcilarly when you find out that your condition is a whole lot scarier than you ever realised it could be. Over the next year or so I can now look back and appreciate that I was going through the stages of grief. I cried many (many!) tears for the life I would never lead (it still chokes me up thinking about it) and I found it very difficult to accept that my life was going to be extra tough because of something so outside if my control. 

But diagnosis also came with some benefits. I could finally educate myself and start to understand what was happening in my body.  I was able to get more help. I got a blue badge and a new car through the motability scheme. I now see an occupational therpist and have a wheelchair. Each little step helped me to feel closer and closer to being in control.

The final stage of mourning is acceptance and I think I've finally reached it. What I never realised before was that until I could truly accept my fate/condition, I would never be able to take control of things.

So what does control look like to me? It looks like my cleaner and my pilates instructor who come to me once a week. It's reaching out when I feel panicked and opening up to people in my life about what's going on. It's having a flare up (as I had in February) and not losing my shit. It's changing my diet (that's a whole other post) and it's buying myself decent clothes. It's even doing my tax return on time!

I appreciate that none of these things are very big, but to me, they are everything. 

It's funny because I'm not really any "better", in fact this most recent flare up was particularly terrifying. I couldn't leave the house for a week, my hip subluxed and I couldn't put weight on it at all and my kneecap dislocated (it's a very strange thing to see your kneecap in completely the wrong place, and even stranger to be able to manipulate it back). I was going to write a post all about the flare up but I realised that I didn't need to. What it's taught me is that I'm learning to cope with these things, it actually showed me just how far I'd come. I guess what I've learnt is that I don't need to have control of my body to have control of my life. I'm never going to know whether tomorrow I will have a dislocated kneecap, but what I can know is that my home is clean, my fridge is full and I'm doing everything I can to make my life better

If 2014 was the year I learnt acceptance, I think 2015 is the year I will learn to take control, one task at a time.

* for full disclosure I was sat in the sunshine when I first started writing this, but that was a couple of days ago now and it's late at night when I am finally publishing this post! 

The Start of a New Year

I think when I look back at the past year I’ll say it’s the year I really learnt to accept my disability. Finally understanding what is going on has made a massive difference, and I feel like I finally am being taken seriously by the medical community. Although this year has been full of medical annoyances, I think I’ve learnt that I’ll pretty much hate any hospital appointment. Last week I went to see a dermatologist about something completely unrelated to EDS or POTS, and as with all of my appointments about the chronic stuff, it was one of the most impersonal and unfriendly experiences. She didn’t smile, introduce herself or generally have any bedside manner whatsoever. Mr Spoonie Foodie was absolutely dumbfounded by it, but I‘ve learnt such is the way with most specialist consultants and get less angry every time I experience it. I’ve started to accept my limitations, now that’s not to say I’m not going to fight them and try and get better, but it seems I am finally learning to live within my capabilities. Deciding to use the wheelchair will probably go down as one of the biggest things I did to help myself, I thought it would feel like defeat but instead it has been totally and utterly freeing.

2014 will also go down as the first year I decided to not go out for New Years, not through illness, but because I knew it would be the wrong thing for my body. We had plans to go to a night at a local pub with friends, but the more I thought about it the less I wanted to go. I woke up on new years eve and decided I didn’t want to start another year with a week in bed feeling dreadful and emotionally raw. Instead I made an absolute feast for one of our best friends and his girlfriend, and wished them farewell when they went off. I had a glass of prosecco and went to bed. It was fantastic! (It wasn’t so fantastic when I was woken up by a very drunk Mr SF at 5.30 am, but we’ll just brush past that). I’m certainly not saying I’ll never go on a big night out again, but I’ve been feeling so good recently I didn’t want to ruin it on what is just another night out.

So, what do I hope 2015 holds for me? To be honest I don’t know, and I’m ok with that. I’m definitely not one for making resolutions, but I do have some aims. I’m starting the year with the strongest frame of mind I’ve had in a long time. I’m eager to do more, and would love to start regular work again, but I’m also aware of not doing too much and pushing myself backwards again. I want to do some studying, as I mentioned before I’m really interested in nutritional science and there’s loads of other stuff out there to keep my mind occupied. I’ve also decided to give myself a Christmukkah present this year of private Pilates classes. I’ve contacted a recommended instructor and am waiting to hear back and I'd like to post more regularly on the blog, particularly more recipes. But most of all for 2015 I just want to stay feeling ok. I’ve had one of the nicest Christmases that I can remember. It’s been a constant stream of family and friends, which although has made me anxious at times, has just reminded me just how good I have it. I recently got to meet my new nephew, and there’s a strangely nice feeling about the fact that the next generation of the family has been born. Yes, things in my life could be better but I’m feeling pretty content at the moment. I have friends, a beautiful home, a loving partner and a fabulous family, plus I cook really good food!