I wasn't sure where this post would go, so it's quite long

I must have started this post five times already. There’s so much I want to say but so little organisation inside of my mind at the moment that nothing is coming out. I know this doesn’t really make sense at the moment but it feels like everything is changing, and yet not really. It’s like I’m on the edge of a precipice and I know that something is going to happen but maybe my parachute will open and it’ll all be quite peaceful. Ugh, I’m not doing very well on the metaphor front but my mind is starting to feel a little let frenetic so hopefully I’ll actually get somewhere now.

This week has been a bit astounding. And utterly exhausting. And frustrating and angering and makes me want to shout at the NHS for its inefficiency. And it has also been a week of insane achievements.

I should probably stop talking quite so vaguely now and let you in on what’s been happening.

I’ve been dreading this week.

Way back in August 2013 I went to see Professor Rodney Grahame. If you have arrived on this blog from researching Ehlers Danlos Sydrome you may well know of him already. Professor Grahame is the specialist of all specialists on hypermobility syndromes. After a long consultation he finally confirmed what I had known all along, that is that I had something physically wrong with me. A condition that wasn’t just a post viral problem, or a vague fatigue related issue, but a definable condition that definitely wasn’t in my head. These diagnoses were Ehlers Danlos Sydrome, Incomplete Marfan Syndrome and Postural Orthostatic Tachycardia. Getting these diagnoses has, in general, been a really positive thing. ME and Fibromyalgia are such vague terms and there is a certain part of the medical community who very much look down on these conditions and dismiss them. They are wrong, but when doctors aren’t even interested in helping or dismiss you it makes you wonder if you are just making it all up, and I’m certain that everybody who has ever suffered from any fatigue related issue will have experienced discrimination in some form or another regarding their illness. People think you are lazy, or just feel sorry for yourself. They tell you that everybody wakes up with aches and pains, feeling tired and so on and you just have to buck and get on with it. They make you feel guilty when you can’t work, or feel like a failure that you haven’t been able to finish your degree.

They make you feel like it’s your fault.

I’m not going to lie, finding out that it wasn’t my fault has been a pretty amazing thing to learn. It’s like a weight has been lifted off my shoulders and I don’t have to feel guilty any more. There have been so many times when I’ve just wondered if I’m a hypochondriac, and maybe that those people are right. It’s quite a relief to know I couldn’t have done anything about this stuff, that I didn’t do something wrong. But I digress...So after the consultation with Professor Grahame I was referred on to two clinics. I was referred to Dr Ingle’s team at the National Hospital on Queens Square who specialise in POTS. There’s been a lot of new research going into this recently (and I’ll explain more about the condition at another point) and his team are pretty much at the forefront of access to it from what I understand. I was also referred to the Royal National Orthopaedic Hospital in Stanmore for a three week inpatient rehabilitation clinic. Well, both of the initial appointments ended up being this week and as you might have guessed they were both in London (well one was in North London but that’s just details).

I’ve mentioned this before but I really don’t like going to London...well to be honest I don’t really like being too far away from my home full stop. At the beginning of this year I was definitely verging on agoraphobic and I think I could easily slip into that sort of behaviour. And there is, I think, a pretty valid and logical reason behind this kind of anxiety. I am genuinely terrified of the prospect of being stranded somewhere feeling horrendous and not having the strength to get myself home. It’s happened before and I’ve had to call my dad to come collect me from stations where I pretty much dragged myself off the train. My energy levels are low at the moment (though I am due a B12 injection and I must get that done this week) and even after an hour or two of just chatting I get visibly tired. Colour drains from my face, I am confused and struggle to follow a conversation, I’m yawning all the time...and that’s without doing anything physical. The idea of being away from home for a long period of time (I mean a few hours plus) really makes me anxious. In general I socialise at home, I shop mostly locally or in one of a couple of ‘safe’ supermarkets that I can drive to and I don’t like spending a night away from my own bed. I hate the idea of being ill around other people. I hate people seeing me that way and being so totally useless. I don’t even like it around my parents and I’ve only fairly recently become comfortable with Mr SF seeing me in that way regularly. I have maybe 3 friends that I let see me in my bad states and in general I just prefer to deal with it alone.

It is quite exhausting dealing with people trying to cope with how ill you are. It can be difficult to hide the amount of pain I am in or to not show how exhausted I am, and it is very difficult for people to understand that actually you can’t have a causal conversation because ALL of your energy is going on not being sick through pain or staying standing up to get to the toilet. It is so inconceivable to most people the idea that getting yourself to the bathroom could take most of the energy you have, and don’t get me wrong thank goodness that is the case because I wouldn’t wish this upon my worst enemy, but that chasm in knowledge can make it much simpler to just be left alone for fear that you’ll otherwise just push everybody away.  And thus, when energy is SUCH a precious resource, the idea of wasting it on something like a train journey just seems ridiculous. Unfortunately, my condition isn’t just that I experience the pain and fatigue as and when it occurs, but also that by overdoing it even slightly, there are giant knock on effects for a long time afterwards on my pain and energy levels. So going to London isn’t just a physical feat on the day, but I know it will knock it out of me for most of the week, if not more, to follow.

However I knew I had to get to these appointments. I’d already put off the POTS clinic in May because I just couldn’t face it and so I made a plan. I have a friend who works in London and lives in Hove. I thought that Hove would be a much easier station than Brighton to deal with as it is much smaller and obviously quieter. As I have finally got a disabled parking badge (it’s amazing, it is honestly opening up a whole world of possible activities now that I don’t have to worry about how to get there/walking too far etc) I decided to drive to Hove to meet her and go up with her on the train to Victoria. There my mum would meet me and we’d go to Queens Square by taxi. I was so close to bailing out. I text her in the morning saying I wouldn’t be able to make it and had a cry on the phone to my dad saying that I couldn’t do it. But then I had a shower and washed my hair. I put the war paint on and...well... I did it. Having my friend with me (she TOTALLY gets anxiety which is massively helpful) meant that I was distracted and had some support on the way, but to be honest the hardest part was leaving the house. I don’t have an issue with the train itself, it is the getting out and getting on my way that I find ridiculously hard. And the anticipation. And the thing was, it was hard. I felt dreadful after my appointment (I think I’ll leave the content of these appointments to another post as this one is already ridiculously long) and was totally wiped out with no energy. I had to call Mr SF to come and meet me at Hove to drive my car home as I was not in a safe state to drive and that was really unpleasant. But, I did it. And it wasn’t THAT bad. I dealt with it. I did call Mr SF and he did meet me and that was the most sensible thing I could do. It turns out I am actually eligible for hospital transport which I will set up this week so the hassle of getting there will be taken away, but I actually did it. I conquered my anxiety. I didn’t think I could.

My sister always used to say to me that when you think you can’t go on, you've only done half of what you can do, and it’s so true. It’s only when you really don’t think you can cope any more that you see what you are made of. I don’t want this to sound like I’m bragging. I’m not that strong really...what I haven’t told you is that before I got out the house on Tuesday I self harmed. I cut my thigh with scissors, deeper than I’ve cut before. I just had so much emotion inside of me and I didn’t know what it was and I couldn’t cope with it. I know it’s not the way to deal with things, and it’s funny (funny odd not funny haha) because I only did it for the first time ever in March of this year, but I also can’t dwell on it. I didn’t cut myself as much as I had done in the past and I still got on and achieved something. So I’ve got to just focus on that.

So that was Tuesday, I still had to get to north London on Thursday morning for 10.40 for my appointment at the RNOH with Dr Mittal. I think I’ve mentioned before that mornings are my worst time of day. It is no exaggeration that the first sensation I have on 6/7 mornings is pain. And it tends to be at its worst level on first waking before I get moving. And even once I’m up it takes me a couple of hours to really ‘come to’ and get on with my day. The level of pain and the grogginess I feel just make mornings horrid. So, a morning appointment in Stanmore is pretty much my idea of hell and I knew I would have to spend the night at my parent’s house in Potters Bar. I hate the idea of spending the night anywhere that isn’t my space. What if I have to get up and I make too much noise? What if I don’t have painkillers or can’t find something? What if what if what if! And a night in my parent’s house followed by a morning appointment only the day after using up all my energy to go to London was literally the worst thing I could imagine. But I have been waiting for this appointment for nearly a year; I knew I had to do it. I ended up getting a taxi, leaving Brighton at around 9 so by the time I got there I was ready for bed (after a quick snack of course, G-d forbid I see my mother and she doesn’t feed me!) And once again, I did it. It was hard, I felt horrendous ( I still do, I had to cancel my plans this weekend and I don’t think I’ll be doing anything this week), but I did it. I’ve got to say, I’m pretty fucking chuffed.

I’m amazingly lucky to have incredibly supportive parents and an amazing partner. It is not easy for them, I get angry and moody and I can take it out on those closest to me. But their support never wavers, they never judge me, and although I get lonely, I know that I’m never really alone. I woke up with a migraine on Friday morning. It’s no surprise really, this week has been really fucking hard on me emotionally and add that to the discomfort of spending a lot of time travelling it really can only lead to tension. When I first started waking up and noticed the pain I tried to keep myself relaxed, calm and in a dozy state, but it was just getting worse and worse. I thought my head was going to explode and I started to panic. Mr SF had already left for work so I couldn’t call him and I ended up calling my dad. And just like he used to when I was younger, he talked to me in a very calm and monotonous voice until my panic subsided, until I stopped crying and was able to cope with the pain some more. He made me feel like I wasn’t a complete failure for calling him and he reminded me of how well I’d done this week. I know that most twenty six year old women would be embarrassed that they had to call their daddy for something like that, I just feel amazingly blessed I have a father who I can turn to like that.

This week has been an amazing achievement for me, but it’s also served to remind me just how wonderful my support network is. With them, I know I can get through this. I have so much more to say, but I don’t feel the need to blurt it all out immediately any more, I’m pleased where this post has taken me. Also it’s late now and I’m ridiculously tired.