Me and My Pills

**Trigger Warning. I’m not too hot on the internet lingo but I will be talking about my experience with antidepressants in this post. This IS NOT pillshaming, but just my experience with them. If you are feeling particularly vulnerable about your medication, this may not be the best post to be reading.**

Things have been settling down here at Spoonie Towers since my manic week in and out of London (Yes, for me, that was manic!), but I have a confession to make.  I did something that I definitely was not supposed to do and just stopped taking all my pills. The medication I used to be on was...

Duloxetine – an SNRI antidepressant that can also be used for neuropathic pain management

Gabapentin – originally developed as an anticonvulsant, this is now one of the first drugs prescribed for neuropathic pain. It is also used ‘off the books’ to help with anxiety and insomnia.

Nortrityline – a tricyclic antidepressant which apparently helps to regulate your diurnal rhythm (day and night) and is used in chronic pain conditions.

I have been on antidepressents at a number of points in my life. When everything first went to the shitter it took me about 3 or 4 months before I had the courage to say to myself – you need help. And that’s exactly what these pills can do. They can lift you out of your hole enough that you are actually able to look over the edge and think, ok, maybe I can do this. When I’ve needed them, they have got me to a place where I can actually help myself and have been AMAZING. I dread to think where I would be now if I had listened to my dickhead of a close confident (I think that there is no need to name and shame, but anybody who knows me will know exactly who I am talking about) and never started taking anything.

I started this particular set of pills about 2 years ago now when I saw a private rheumatologist (the one who then referred me on to Professor Grahame). At first I just took nortriptyline before we added gabapentin into the mix, testing out the effect of different doses. At this point I didn’t want to go onto a strong antidepressant. The last time I’d tried to go on them I spent a week feeling like I had taken drugs with none of the high. My skin was hypersensitive and it was painful for anyone to touch me, I felt panicked, my heart was racing and I couldn’t sleep.  However, after about a year of putting it off and becoming increasingly depressed, isolated and anxious, my GP and I decided it was time to give them a go.

Something that I (and Mr SF in particular) struggle with about antidepressants is it is so hit and miss and the research is often tenuous at best. It isn’t like they test out these supposed non working chemicals in your brain and then match them up to the best drug, instead they just hand out pills like they are sweeties and hope for the best. I think it is quite dangerous to hand out antidepressants without some other complimentary therapy to help the patient in coping. Pills are only one part of a picture, and they are much easier to hand out than effective talking or coping therapy (which as we all know are massively oversubscribed on the NHS).

I have now been on this concoction of pills for the best part of a year, and in that time I don’t seem to have got any better. In fact, if anything, I seem to have deteriorated, both physically and mentally. My anxiety has increased tenfold (though that is definitely MILES better since I actually got to the London appointments), my depression worsened resulting in self harm and my activity tolerance has just dropped dramatically. Then, the other week I ran out of my pills. I tried for days to get to my doctor, but she only works part time and is always booked weeks in advance. So I did the thing the docs always warn you off doing and I said ‘fuck it’. I’m fed up of taking more than a dozen pills every day, worrying that if I miss one I’ll go mad (except that I have never really noticed a difference between the days I take them and the days I don’t). I just stopped...and this is NOT ADVICE THAT ANYBODY ELSE SHOULD BE FOLLOWING but I feel so much better. I am definitely in more pain than before, and that is obviously utter shite, but I feel alive again. I feel like I’ve been deadened inside for so long and that I am finally remembering who I am underneath the haze of drugs. I am passionate again, I’m re-finding my feminism and I am wanting to tackle the big issues. I feel like I’m finding a part of who I lost when I was 20 and first went a bit batty (I’m allowed to call myself batty!) It’s wonderful. Oh, and I haven’t gone bat shit. I’ve had bad days, obviously, but I actually think I’ve had less bad days in the last month than I had in the month before that. Oh, and I’m hungry again! I don’t think I’ve been actually hungry for months. I’ve just eaten enough to get me by, often only one meal a day. Now, I’m waking up hungry and wanting to eat., this has never happened in my life before, but obviously the hungrier I am and the more energy I get into my body the more I will be able to do (in theory at least).

I haven’t stopped treatment. I see a private psychotherapist once a week that I have been seeing for about 4 years now(who is DELIGHTED I am finding my passions again – he thinks I actually look different since I’ve come off the pills) and I stay in regular contact with my lovely GP. I *know* this isn’t the way to do it and I certainly don’t suggest that anybody else does, but for me, for now, it was the right thing to do. I worry about what will happen when winter comes, as I know I suffer from SAD, but there is no point worrying about it now. Plus, I evidently wasn’t on the right head meds.

So yeah, that’s happened. I still take over half a dozen pills a day in the form of vitamin d and painkillers and every three months I go and have a b12 injection to help boost my mood and energy. But for now, I just want to feel and think and be me. Not the me that is masked by deadening drugs and is hidden behind a haze of apathy. I don’t think that is so wrong.

I only bloody got to London twice in one week!

Last night’s blog post was quite cathartic for me. After last week’s London adventures I have been so exhausted I hadn’t really had a chance to organise my jumble of a mind and I think I started to do it. It has a bit of a strange tone to it I know, but that’s because this week has been so strange. Not only did I actually get to London twice in a week (I still can’t quite believe I did this) and stay at my parent’s house for the night which were major achievements, but I also had two pretty major and massively disappointing appointments.

I’d like to start with a caveat, I think the NHS is freaking fantastic. The fact that I am able to access any treatment and I don’t have to have the stress of the cost on top of it is amazing, I dread to think where I would be mentally and physically if I was in America. However, the NHS is not perfect, a point on which I think we all can agree. I also understand that most doctors do care, and do want to help, but are tied into a difficult system that they can't necessarily change. Now that is over, I'll get started.

People with EDS are known as zebras in the medical community. Apparently medical students are taught that when you hear hooves, think horses not zebras. That is, the most likely cause is the most common. However, every now and then you get someone like me who comes along, who is most certainly not a horse. I am a loud and proud zebra, but it’s taken them over 10 years to work that out. Over the years I’ve been passed along to various specialists; rheumatologists, psychotherapists, endocrinologists, pain specialists, physiotherapists (and the list goes on). I’ve had MRI and CT scans and am more familiar with bloods than a phlebotomist. I’ve seen private psychiatrists (who told me that I was anorexic, which couldn’t be further from the truth!), osteopaths and counsellors, and I even had a yoga instructor for a while with whom I spent an hour a week breathing. And yet, it took over 10 years for a doctor to ask me to bend my body around, to touch my extremely soft skin and noted the scars that appear from nothing. It took them ten years to take notice of the fact that 80% of the time when I stand up my vision blacks out slightly and that it was more than just being tired all the time. This was ten years after the first osteopath ever remarked on quite how hypermobile I am and two years after Mr Spoonie Foodie (a biomedical scientist) suggested I had EDS and Marfans. As you can imagine, it’s been very frustrating decade, but that is now behind me and I have been diagnosed, which gives me access to a lot more treatment.

As I said before, Professor Graham is the specialist of all specialists when it comes to my condition. So you’d think, that once he referred you on, your next consultant would read his notes about you and then take things from there. But no, apparently the NHS is incapable of speaking to one another, so instead they waste my time, the consultants time and their money by repeating this same consultation again and again and again. They're cutting services left right and centre and yet there doesn't seem to be enough communication within the NHS to prevent unneccesary and repeated trips. Why can’t an initial contact like this between patient and consultant be done over the phone, or by skype? Surely the specialists understand that getting to/from London and these appointments takes everything out of people with these conditions?  In the past year I have had no less than five appointments which were EXACTLY THE SAME! Well, six if you include the one with a geneticist who was a prick and refused to do the gene test and also said she didn’t think the Professor Graham was right. But that’s beside the point.

So (and I can imagine you can see where this is going) last week’s appointments turned out to be the biggest disappointment ever and actually a fairly unpleasant experience. My referral to Dr Ingle’s clinic at the national hospital was, from what I understood, the start of a set of autonomic tests. At Dr Ingle’s clinic I was met by a consultant who didn’t introduce himself to me. He then marched off along the corridor far quicker than I was able to walk and when I explained that I couldn’t go that fast he didn’t slow down, so I was left peering into each doorway trying to see where he had gone. It was pretty humiliating to be perfectly honest. The appointment ended up being only 20 minutes long and wasn’t actually the start of testing at all, but basically him talking at me about the condition. Now, don’t get me wrong, this was massively useful and quite interesting. It turns out new research suggests the POTS is actually connected to the hypermobility. In most people, blood pressure is maintained by constricting and relaxing of the blood vessels, thereby forcing blood around the body. So when we stand up, the vessels in our legs should constrict in order to maintain blood pressure around the body and counteract gravity. It seems that what happens in hypermobile/POTS patients is that our vessels don’t constrict as they should and instead, in order to maintain a steady blood pressure and not faint, the heart pumps quicker. This is linked to many of the fatigue symptoms, as well as palpitations and of course, fainting. There has been a lot of new research going into this and there are quite a few new treatment options starting with drugs, but of course before you can get these you need to confirm that the patient has POTS. To do this they run tilt table testing, which is what I thought I was going to start last week. Well, no, once he’d done talking to me that was it. I was sent on my way and told I would have to wait EIGHT TO TEN MONTHS just for the testing to begin. Oh, and he also casually dropped it in that this might of course not be POTS and could be something more serious like Addison’s disease or a tumour (but you know, we’ll just wait a year to find out!). I mean seriously? What the hell was the point in that appointment? Why didn’t they just call me up and have a chat over the phone instead? And waiting another year? I know that the equipment for these tests etc is expensive but that will be nearly 2 years since I got diagnosed before even getting tested, let alone beginning treatment! I shouldn’t complain, at least I’m on the waiting list finally, that and there is nothing I can do, but it is so incredibly frustrating to be told to just keep your life on hold for another year before we can even think about starting to get you better. I left feeling horrendous, in loads of pain and absolutely exhausted. And all that to be told I’m just going to have to wait for the best part of a year.

As you can imagine, I wasn’t massively looking forward to Thursday’s appointment. This time I was under the impression that this was the assessment to get into the inpatient rehab clinic that seems to be the only major treatment available for EDS. I was prepared for another long waiting list, but what I wasn’t prepared for was to find out that this wasn’t the assessment. No, this was the pre assessment before I actually have the assessment for the rehab clinic. Um...what? Surely the referral from Dr Graham was the pre assessment needed by a rheumatologist that would then be followed by the assessment for the clinic? Apparently not. So instead, I had an hour long appointment (to be fair she was quite thorough) where she literally repeated everything Professor Grahame had done, down to the point that where I missed something out that was in my notes she’d then ask me about it...I’m sorry, but I REALLY don’t understand why on earth I went through that appointment. She again checked my arm span/height/hand/foot ratios for Marfans and came up with the same conclusion as the Prof that I had incomplete marfanoid habitus and confirmed I had EDS (though gave me a lower 6/9 on the beighton criteria than his 8/9). So now I am going to have to wait another 2 months before I can see the assessment team who will decide whether or not I can actually go on the rehabilitation programme and then another 6-8 months before a place becomes available. I mean, thank goodness I’m finally in the machine and chugging away but I feel like my life has been on hold for so long. I just want some practical help with how to move it forward just a little.

On that note, I’m doing my exercises that the physio gave me. They are basically very slow resistance based exercises that strengthen the muscles, and they seem to be working! For the first time in my life I actually have some bicep definition and I am noticing how I am now able to do more of the exercises as well as feeling less wobbly whilst I’m doing them. It’s really exciting to actually see and feel the progress I am making. I’m still not able to walk for much more than a couple of minutes and there are days where that is still a struggle, but I’m seeing some improvements and that’s all I need.

Although its slow going, things are definitely heading in a good direction at the moment. Mr Spoonie Foodie moves in in two weeks which is ever so exciting! I’ve got some sorting out of my shit to do first and I’ll definitely have to be tidier(!) but I really can’t wait. More and more I feel like we are a proper team. We haven’t had the easiest of relationships, neither of us are the easiest of people, but I think that’s what makes us so strong. Also, my parents absolutely love him which has got be a bonus!

So perhaps my odd little metaphor at the start of the last post makes a little more sense now. I am definitely on the verge of some very big changes, but some of them are taking a bloody long time to come.

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.