A week past Friday, I was up and at it early. Well early for me or any chronic illness sufferer. Being alert at that time of the morning can only mean one thing. No, sadly not limited edition shoes, that's thankfully usually a more attainable 12pm! I had a medical appointment. A meeting actually. It's happened reasonably quickly (in the NHS world) and I was keen to tell you all about it and get my thoughts from the day down on paper (so to speak) while it was all still fresh-ish in my mind. A bit of background first and something I haven't told you, I'm currently seeing a clinical psychologist and have been since last year. It's not my first donder down this path, years (and I mean YEARS) ago, I was referred by my doctor in the hope that they could offer something new to try, as they were dealing solely (in my area) with pain management and chronic illness. Back then I think I baulked at the idea. How could talking about an illness that was disabling physically and tiring physically, help me? Were people thinking this was an illness "all in my head" (not uncommon unfortunately) or even that I was depressed and in need of counselling? Did I say this to anyone but my nearest and dearest? No, I graciously accepted any help that was offered, mostly for fear of being mistaken for someone happy in their current situation, not in need of help and not willing to get better.
I think this was roughly 10 or more years ago, so at that point I only had a few years of back-story to produce, to a woman around my age (who I immediately quite liked-she was on my wavelength). I think I saw her once or twice and then she left, so I was placed with someone else. Cue the whole back-story again. I can't recall what happened to them, but they sent a third person. A young Irish student. He was terrified of me. He literally shook in my presence. Am I mean if I say that made me giggle? I vividly remember some of the routine I went through with him and naturally the back-story. Again. We sat at the dining table, him shaking (obvi) while he pointed to a diagram of a body and talked through each part while I said whether or not I felt pain there (because the concept of "hurting all over" isn't clear enough) and he circled it. We were 3/4 of the way through by the time I realised he had only been talking about the front of my body and we were still to do the back. Y'know for those moments when you can feel the front of your ankle hurting but not the back (!) I'm sure there was awkwardness of extreme proportions when it came to the 'bottom' on the figure. A decade on, I'm still cringing.
Anyway, this boyo too moved on to pastures new and yet again I was given a new person to strike up a relationship with and likely work through more awkward diagrams with. By this point, I'd been given nothing helpful to work on and my cliched visions of laying there while they found a link between being an awkward middle child and falling ill (!) were just cliches. These people knew nothing about me, had no interest in getting to know me or seeking answers for why I was unlucky enough not to recover after glandular fever all those years before. They seemed to be big on paperwork. I endlessly filled in "diaries" of literally every single thing I did in a day. Was I to include the 2 hours it took me to remember what I did or on days I'd forgotten about it altogether,'make up' what I'd done? To someone struggling with energy, writing constantly is a tricky task, not to mention I wasn't gaining anything from it. I'm sure I spent longer filling in the damn thing than whatever I was supposedly doing. The worst part is, nobody took any interest in the data. I think they just wanted to leave the house each visit with filled in papers, because it looked like they were doing something with me. I dreaded each visit, which in itself was detrimental to my progress and energy levels. I'm terrible for second guessing too. Every time I was asked a question I pondered "why are they asking me this?", "if I say "x" they'll assume this and they'll lock me up in a padded room thinking I'm severely depressed and have brought this illness on myself". Even the diary must have right and wrong entries I thought. So sometimes I'd tell the truth, other times I'd tell them what they wanted to hear or what I thought they wanted to hear, because I didn't have the energy to argue. The more I acted like I had my shit together, the quicker they'd leave and I could go back to my miserable existence without being accountable to someone.
They did indeed send me one last person to deal with though. She was older, hard to talk to (not that we ever spoke of anything personal), entirely out of touch with the real world and nuttier than a Snickers. Seriously if anyone needed help, it was her. This one nearly drove to me to insanity. Unlike Irish boy, I couldn't get a laugh out of how horrendous this situation was. Not even with a distance of 10 years to be honest. She started me on a well known method for M.E. sufferers of pacing and graded exercise. The theory is, you walk for say 1 minute a day and do this every day. Some days you may feel able for more, you don't. You stick to the minute. Some days you can hardly move, tough luck mate, you walk for a minute. Over time you slowly increase this (I recall by a very small 5%, but I could be wrong) and it would become easier as your body adjusted and accepted this new physical activity and it became "normal". I kinda see where they are coming from. Firstly, everyone needs something measurable to build upon and see progress and in theory (and that should be in bold print) you'll feel in time, that minute of walking is no problem (because of course at first, it'll be sore) and it soon becomes 10 minutes and by the end of the year you're doing that walk on a beach in Ibiza with one of those drinks with brollies and sparkly things in.
Yeah, in theory. In the real world there are set-backs (plenty) and the illness is still there. Pacing almost makes the whole thing seem like a motivational issue. If you just stuck at, you'd be cured! The other problem was, it wasn't just the walking, but pacing was to be applied to my whole life. Back then I wore makeup if I was going anywhere (oh the days), so I was to apply makeup for 5 minutes. Every day. Even days when I wouldn't be wearing makeup and if I was and couldn't squeeze it into those 5 minutes, I was screwed. I was going to look like a total numpty. A quarter made up numpty. Computer time, limited to 10 minutes. Did we even have broadband then? Probably not and so signing into emails and checking a few, filled your time and you logged back out, only to go through the same routine again later in the day and in the end you never really achieved anything within the time limits. I recall my Dad rushing home from work each night to take me out in the wheelchair for 20 minutes. Every night, even in freezing snow or when you really didn't want to or feel up to it.
I watched a lot of TV, so this also got a heavy dose of crazy all over it. Ten minutes on, ten minutes rest. Ten minutes on, ten minutes rest. I kid you freakin' not. For a start, I live in a house with 3 other people. I cannot disrupt their quality of life by switching off the telly and laying in a darkened, silent room for 10 minutes intervals. Neither can I take myself off upstairs, because you know, hello chronic illness here, running around the house is kind of the issue (ditto going upstairs to do makeup for 5 minutes or getting up and down off a seat to go on the computer). This was in the early days of X-Factor and I realised I was hitting my head against a brick wall whilst trying to explain that this intermittent viewing routine was highly disruptive and causing an adverse reaction to the pleasure I was supposed to be gaining from it in the first place. I explained each contestant (during live shows) was on screen for less than 10 minutes and I'd miss every second performance and that I'd likely miss the next one for asking what the person before sang and how they did. She just couldn't understand this. I couldn't believe I was throwing a hissy over a bloody singing contest, but the principle was what I was really fighting. In the end I think I probably lied to her to keep the peace (and my sanity) and paced myself, within reason. I also recall a near fight one week when my Mum, who worked at the time, happened to have a day off and was home to witness what I was up against. Snickers was demanding my friend help out more because she had a car and we didn't (which poses no end of problems for other people, but none for us). Mum explained my friend was only home to deal with her very ill Father after her Mother had just died and that there was no way I was imposing on her too. It didn't go down well. Soon after that, she too left, because she couldn't deal with the job. No kidding! That was it for me, I was done with all the psychology department had to offer. They said I was doing brilliantly and could manage on my own now anyway, so hooray for me.
Fast forward to a couple of years ago and you all know I suffered a huge setback after an undiagnosed iron deficiency and side-effects of the disruption while we were renovating the house. Once we dealt with the iron but I still hadn't recovered, I was absolutely at my wits end. I was desperate for anyone to come up with something to get me back on track and back to the semi-life I had a few years ago. I spoke about this on the blog back then, but my doctor consulted with a local specialist and they came up with several options for me. I agreed to most of them. I'd try them all if it was the key to turning things around. One option was seeing a psychologist. I still had the same doubts I had back then about them not being able to help me because I was suffering physically and talking was never going to help or that they assumed I'd become depressed, even though I insisted I wasn't. Plus my previous "experience" in this area had obviously severely discouraged me from trying it again and seeing as I was now in a worse position than back then, nothing they'd done had helped anyway. You can tell how desperate I was, that I was willing to try it again and once more it's that thing of not wanting to knock back "help", however disguised that may be and I was at a point where I didn't think it was possible to get any worse.
It didn't get off to a great start, there's a long waiting list for mental health these days. In the meantime I tried the other options on the list (physio (again) which didn't really go anywhere and seeing the specialist again (the stories with him are worse than psychology). The physio seemed to be pinning all her hopes on psychology, I was obviously sceptical, but as usual didn't voice this. I eventually got a phone call, out of the blue, from someone wanting to (surprise, surprise) know my story in my own words. UGH! We spoke for over half and hour. I was shattered by the end of it (talking can be really tiring for me), but she said she felt psychology could perhaps offer me something. Like shit, I didn't know me rambling was actually a hidden test on whether or not I qualified for help! This was before she dealt me the blow that she was going on maternity leave, so wouldn't be dealing with me personally (WHY did I just give you my life story?) and that now I was on the waiting list to see someone. So there's a waiting list to get on the waiting list! I sincerely hope any remotely high risk cases are dealt with quicker than that. I've since learnt there's a whole department purely dealing with chronic illness and clearly there are a lot of sufferers out there, but more than once I've worried that with psychologists spread so thinly, that I'm wasting their time when I'd rather it went to someone that really needed it.
I eventually and I can't remember how long this whole process took, but I think it may have been around 18 months, got an appointment. It was at the local hospital (aka my second home) and along I went. I had a form to fill in beforehand, which I thought was hilarious because you could evaluate yourself on it as the scoring system was clearly shown next to each answer. I can't really remember it now, but it was multiple choice and the results reflected depression or anxiety. I could see how much "D" scored on each answer and how much "A" scored, so if you had any sense and for whatever reasons (like you are dangerously insane) wanted to cheat the system (and "yourself"), then it's easily done. I told her this. Part of my new approach, was to be totally honest this time and not fall into the trap of going along with whatever they said to keep the peace. Your perception changes a lot from mid 20's to now (mid 30's) and I guess I just woke up to the realisation that these people don't always have the answers. They may act like they do, but I wasn't going to get anything out of this if I blindly followed like a sheep and didn't offer my opinion on what does and doesn't work. Anyway, the questionnaire really bothered me because I answered honestly, but could tell I was scoring high in depression and anxiety for some, when it was really a physical issue for me. Like I say I can't remember it exactly but it was things like meeting up with friends (or withdrawing from them) or taking care of your appearance. Well I suck at both these days, but it's not because I'm depressed, it's because I'm physically unable to get out of the house to meet anyone or have no strength to brush my hair. I told her this too. I even specifically chose not to wear all-black to the meeting (I was gutted I couldn't find any "happy" yellow in my wardrobe), on the off-chance she'd see that as me feeling down or wanting to cover and hide myself or something! She came out dressed head to toe in black and I virtually fist pumped!
She was around my age and completely threw me by asking about my story, but not just about how I fell ill, about my life from birth. Actually pre-birth! Yeah my second guessing thing was in overdrive (did she think there was a link between something in my childhood to me being ill now and again it's this trust thing where I'm never sure who I'm dealing with and if they are in the camp that believe this is a real illness or those that think it's in my head), though the doctor said he would tell her I did this (I don't know if he ever did). I told her the family basics, what I was interested in (fashion), school life (sucked), Uni life (loved it), working in London (really loved it) then my final year of Uni and falling ill, blah, blah, blah. At the end, she asked me and it's something I've been asked a lot by many different people, "what are you looking to get out of this"? Seeing as I was on a roll with being completely honest, I admitted I had my doubts about what she could do for me, but that I was desperate and everything I'd tried so far had never come to anything great. If once more I could point out a serious error in the way they handle things, she said I'd now be on a waiting list to be seen by someone regularly. Ugh! Seriously, I don't think all this waiting is acceptable. I'm not depressed, but even I felt dejected and of no importance to them (IIRC any correspondence was always worded abruptly and ended with something along the lines of "if you no longer require our services" in a bid to weed out those that got bored waiting). I'd imagine if you were struggling mentally, this would heighten that feeling of being an inconvenience to them. Plus she said it might not be her I saw. I REALLY had to control myself at that point. After an hour of talking, I might have to relay this to someone else for the millionth time or worse the information is just passed along and key points lost?14 years has been a hell of a long time to repeat the same story over and over and guess what? I already know it, because erm, it happened to me. It sucked to go through it. I don't need to hear it again. I don't want to hear it again and I certainly don't want to waste any more energy on it. It's not easy to divulge all these details to a stranger and more so when you feel like the information is just used as an entry level to whatever they are offering and that nobody actually cares about the real story. I'd also like to add, it's not just me that feels this way. Whilst I was story telling, Mum says a guy kicked off in the waiting room, because he was so angry at seeing a different person every visit and having to explain his story each time. Continuity of care really needs to be corrected.
Anyway after a few more months of waiting (and my memory is so terrible these days I can't remember exactly what happened, but I do recall several attempts to get in touch with her, because you call and the secretary answers, then emails a message that you've phoned and you play this phone tag game for weeks), but I started regularly seeing her and it was the same person I'd seen the first time, so no additional story telling, phew. Like I say, we've been seeing each other since last year now, every couple of weeks or so. In the beginning I had several home visits with my parents involved. She wanted to talk with all of us together, as my family are my main support and she just wanted to know if we were all on the same page or not. We had one hospital visit a few months ago in an attempt to get me out, but then I fell ill(er) and haven't been able to keep those up, so it's back to home visits. I'm not saying it's been smooth sailing, we've had disagreements on things, but I've spoken up a lot more than I expected to and certainly been more vocal than those other visits. I do at times feel like I'm still battling with being labelled as lacking motivation when it's physical things stopping me and then I also feel the more I protest, the more she might think I'm covering up for the fact she's right, which isn't the case at all. I realise my mind races and all this guessing what she's getting at is twice the work for me, but it's simply the way my mind works and I'm struggling to unlearn that. I've also always felt damned if I do and damned if I don't. You know one minute I'm doing too much and not resting and then in the next breath I'm not pushing myself enough. I feel like I can't win. It's been hard, but as we've built up a relationship, I've found I've changed the way I'm looking at things. She's given me a lot to think about and most of the time, I feel better once she's been. It's been nice to have someone to talk through these things with and it's spurred me on to start these M.E. On posts on the blog, because I'm otherwise bottling all this up.
She's taken a completely different approach to anyone previously and I totally appreciate that. She's actually taken the time to read my notes and see what hasn't worked before (and actually on our last visit, she'd really read back all that stuff as she was worried about how ill I'd become and was trying to pinpoint why) and she's keen not to push the same diaries/diagrams/pacing/getting nowhere stuff onto me. I've told her about my blog and she's worked this into things we've been doing. Most of the time I don't advertise that I write a blog, out of fear they'll take it away and say it's not doing me any good, when actually it's my only connection to the outside world. So I'm ecstatic she can see what it means to me and is willing to incorporate it into what we are doing. She even and I feel terrible about this, has tried to move our appointments around because they kept landing on a Friday around 12pm which coincided with shoe launches, but again, she's seen that this is something that is important to me.
She's also been totally honest from the beginning about how she's not going to cure me. She can't take away the physical pain or make me any less knackered and I've never had someone admit that before. They usually make me feel like if I follow their commands I'll be cured and if I'm not, then I've been doing something wrong. Instead she's aiming to manage the current situation a little better. Which if I'm honest, I'm a little sceptical about, because the reason the doctor thought I should see psychology was because I manage so well and apparently I should be an emotional wreck by now and I'm not. We even chatted about this the other week, she said she felt like she was prodding me to cry, because she can't understand why I'm not crying at how desperate things become at times, especially having told her about the life I was living right before I became ill. Again I'm just so appreciative that she can picture (or try to picture) the person I used to be, because that's never meant very much to anyone before (however I do realise it's hard because none of these people I'm dealing with knew me back then). She said last time, I'm difficult to read and my mouth and face may say one thing, but she wants to press for what's in my head. Old habits die hard I guess! No, I am opening up to her more, but in the back of my mind, I do keep thinking she'll leave because she'll grow tired of not being able to do anything for me or else I'll be doing better and she'll think I've cracked it and move onto someone else. It's happened a lot over the years and then I end up on my own again with no outside contact and at some point deteriorate and there's nobody there checking in on me. Anyway, because I'd been really unwell recently, she thought it might be good to get my doctor, the physio and the specialist all together with me and discuss what can be done for me.
I mentioned it to the doctor, who had been thinking the same thing as he gets frustrated that he can't do anything to help and so this meeting was arranged, which takes me up to Friday. This post has turned out much longer than i anticipated, so I'll leave you with this background info for now and write the second post as the meeting part.