So before you read this post, you really need to look at the first part (seeing a psychologist here) which gives some background on how and why this meeting came about. In my last couple of sessions with the psychologist, we prepared for this meeting. It was hard to do though when we didn't know what the others were bringing to the table. Actually our last session had to be done over the phone and I never feel quite as relaxed with that as I do talking in person. So I didn't feel ready for this to be honest. It's such a hard illness to hold discussions on, because there's no right or wrong way to deal with it or no tried and tested method that works for everyone. I am constantly told that nobody knows what to do with me. They are frustrated. I'm obviously frustrated. So I wasn't expecting miracle cures or magic wands I'd never known about before. I didn't know what we were going talk about though. I wish I'd written this post straight after the meeting, but I began my previous post and didn't have time to finish that. Once I got home there were so many things I thought I should've said (great one for "after the event") and I felt I had a lot to talk about to the psychologist in the next session. As time progressed that feeling of being annoyed with myself for not thinking of it at the time was still there but I started to lose sight of what I wanted to say. That has now turned to a total jumble in my head (but I can't stop thinking about it) and rather than feel frustrated I'm getting angry. Not necessarily at myself, more at them for some of the questions and now I'm feeling...I think disillusioned would be the right word. I feel more confused than ever about what the next step is or what I should be doing and how I should feel after this meeting. So I'm sorry this post might not be as logical as it would've been had I written it back then, but I'm hoping as I get into my stride, I'll remember bits and pieces and it might also help get things straight in my head.
First off I want to say how grateful I was that this meeting happened. Getting all four people together at once can't have been easy to negotiate with differing schedules (and only my GP and physio based at the hospital), so I was and still am appreciative of that. I didn't expect it to be organised so quickly (roughly a month), though I do wish the timing had been more on my side. I had to be up, dressed and along at the hospital before I'd even be awake usually. Though as a one-off I was more than prepared to do this. They were meeting first for half an hour and then I was to be brought in, with my Mum for the second part. Although I know all four people and have good relationships with three of them, it was intimidating being wheeled in and facing them all, especially when I didn't know what had been said beforehand. I was so glad my Mum was allowed in with me, because sometimes my brain just doesn't function as quickly as it used to, I can forget words, get lost mid-sentence on the point I was trying to get across and not pick up on everything said. So it helped to have extra ears and also support.
One of the most frustrating things for me and not just at this meeting, is I always feel the onus is on me to come up with a solution. Obviously if I knew what would make me better, I'd do it. I'd have done it 14 years ago and I'd have "M.D." behind my name now. What am I supposed to say when it boils down to me coming up with an answer? I honestly don't know. I was asked what worked for me and what hadn't in the past. I found this hard to answer because although some things may have helped me on my way previously, they aren't working for me now. Something has happened over 2 years ago, that I cannot seem to recover from and I don't know why this is or how I can fix it. So as I tried to gather my thoughts, my Mum immediately said that diary writing was not something that ever worked for me and I agreed. I knew her comment was directed at one particular person in the room (for fear of him making me write another one), but my psychologist jumped in to say she felt writing things down had helped in regards to blogging and organising my day and the doctor asked me to begin with positive things instead. I was annoyed as I felt like I'd said something wrong and because I'd been shot down straight away I then felt I couldn't bring up anything else that hadn't worked. It's a pet hate of mine to be asked for an opinion then asked to change it because it wasn't what they wanted to hear. Mum then went on to say that she felt the psychologist had helped the most and that even although we weren't alike, she understood me and what was important to me. Much to the embarrassment of my psychologist! I wanted to speak up and say that another two people in the room also knew me well, but I figured that would seem like bullying the one that didn't. I just didn't want them to go away thinking that after all these years they haven't done anything for me or don't know me well, because they do. I said this to Mum once we were home, but she hadn't intended it to sound like only the psychologist had helped. I did speak up to say that it's helpful to be treated as an individual person and not a statistic. In the past I've not reacted well to an approach that is very 'textbook' if you know what I mean. With a "you must do this and you will improve in x number of days..." as it just doesn't work like that.
As for other things, well I enjoyed physio (way back at the beginning of my illness) and we tried this again around 18 months ago and it got ridiculous. I was doing very, very little each session and anytime we tried to increase it, it had a detrimental effect and we had to start over. It was a waste of time for both of us and even getting out of the house to attend the once monthly appointments became too much and we called it a day. I just can't seem to build my strength or stamina or anything that is required to get me back on track and this is my stumbling block. The pacing (not rigorously) was something I found I continued to use, years after it was introduced. For example in my walking, which I tried to do several days a week, I increased the distance every so often. This 'worked', albeit very slowly, but it's not working now. I'm not even strong enough to get started, so the whole thing seems futile. Once again I find myself in the position of not knowing what the solution is, nothing is working this time. I'm never feeling better or like I can try again and I don't know why.
I'm being slightly cautious about one person at the meeting, that I don't have a good relationship with, but I don't think it's fair to blast someone on the internet, when he can't defend himself, so I shan't be too specific. However my Mum (I could tell she was looking for answers and getting a bit perplexed), spoke out and asked him if there was anything in the decade he's been in this position, that he could offer. The reason we don't get along, besides the fact he just doesn't "get me" at all, is that he's very political in his answers. He basically repeated back what I'd just said, saying different things work for different people and everyone should be treated as an individual! He then (and this was when my heckles got up) said he'd had no idea about the iron issue a couple of years ago (actually he called me "anaemic", which I never was) and that was utter bull. It was because I wasn't recovering after the iron deficiency that I had this one-off meeting with him (I think it was May last year and he basically waffled for an hour and sent me out with a prescription for Vitamin D as if that would cure me). Everyone in the meeting is aware that we haven't got on in the past, so I could feel all eyes on me at this point and I just let it go and let him pretend he didn't know, when I knew fine well, he did.
To direct the heat off him, he then asked how long it took to recover from an outing just now. Once more I hate being asked this, because it varies greatly. It doesn't always hit me straight away and sometimes it's worse than other times for no reason. He asked what would happen if I did it again after recovering for a week. I knew where he was going with this, he was trying to get me back on the pacing game, because it's the only "trick" he knows. He also said something regarding the wheelchair (that I can't quite remember), which made me think he thought I was pushing myself to walk and had an issue with being in the wheelchair. I let him know this wasn't the case and I'd happily go out in the wheelchair every week if I could. However it's not possible for me to do that, because I simply can't maintain it and I still suffer pain and exhaustion, even from sitting. I'd maybe manage for a short while, but then I'd end up feeling worse than ever and back to square one. He asked where I currently frequented and I was seething by now and blurted "HERE, this hospital, every department, that's been my whole life for two and a half years"! Dentist, doctor, psychologist, physio, ward, all in the same building. He KNOWS this. I keep repeating it and it doesn't seem to register. I don't get out unless it's for one of those things and that is enough to knacker me until the next time. I'm struggling to keep up with showering once a week, so naturally I'm not partying or shopping or running around doing whatever they think I am. Why can't anyone understand this?
This is why I'm at the end of my tether. If only it was as simple as a little encouragement required to get me back on track. I'm physically knackered. Incapable of maintaining any exercise routine or activity of any sort. Jeez! Then I was asked what I wanted and this question is really starting to P me off too, because I always reply "to get better", even although I feel like that's too simple and some sort of trick question, but again I'm like, what do you expect me to say? I feel people scoff every time I give that reply and I don't know why. Do they think it's too big an ask, that I'm kidding myself it'll ever happen? I said I realise that's a long way off, but that even if I could get back to the semi-life I had a few years ago, that would be a massive improvement on how I'm living now. I was asked to expand on what that was like, as the psychologist didn't know me back then. So I said, going out on my own for walks most days, doing something bigger like lunch out or shopping every couple of weeks in the wheelchair and wearing makeup and clothes again and being able to meet up with friends every once in a while. I felt there was a deathly silence. So then I was asked what I would do to change the way things were now. Once more I felt this was a trick question, but answered honestly. I said if I knew that, I'd have changed it already. Once more I'm feeling like I have to come up with the answers, I'm not a doctor, I don't know!
So then, they said they'd discuss things further and see what they could come up with, but that we could leave. They also said, what would happen if they couldn't come up with anything, to which I replied I was half expecting that. I was then asked how that would make me feel. I said I'd just get on with things and I still feel like that now. I've often felt like I'm hitting my head against a wall, but what can I do? I'm not going to give up entirely just because they don't have a cure. Over the past week though, I've just felt totally lost. If I don't have a plan of action to stick to or aim for, what am I doing? If I was capable of getting out and about with no issues, then I wouldn't be ill would I? So do I just keep pushing myself to get out, even if it kills me, to prove a point? Do I suffer the increased pain and tiredness and likely be out of action completely for weeks, but at least I've had that one outing? I did say in the meeting, it was hard to do this, because it's easy for everyone else to dictate it, when they're not in pain afterwards. I find I get no enjoyment out of anything now, because it always comes with a hefty price of me feeling terrible and unable to function for weeks afterwards and when you're in a constant cycle of that, it's hard to find pleasure in things that hurt you.
Like I say I came away thinking of dozens of things I should've said or highlighted and the whole thing seemed to pass so quickly. In our preparation sessions beforehand the focus had been on discussing how I feel abandoned, either when someone has done all they can for me or else I'm beyond help and they dismiss me, then I'm left on my own with no 'medical' contact checking how I'm doing and inevitably at some point, worsen. I've had this happen continually over the 14 years and although I'm not dying and there's probably little anyone can do to help, it just doesn't feel right that unless I seek it, I'm ignored and left to my own devices. However, we never discussed any of this at the meeting. I felt they asked things, I wasn't anticipating. I can't help but feel infuriated when I'm looking for help and they're all looking to me to come up with solutions. How many times can I explain how desperate things are before someone really takes it seriously and does something? No wonder I cope so well, I just have to. As for the wanting to get better thing being mocked, well that makes me mad too, but even more, it's actually upsetting me now. Why would I not want to get better and be back to that fun, fashion-obsessed, energetic, happy woman I used to be? All the dreams and ambitions I had for myself have been completely wiped out, so if my aim now isn't to get better, then what is it?
I realise this has been a lot of reading for you all, between the two posts, so well done if you got this far. I'd love to know your feelings on it all and if you think I blew the meeting (honestly, I feel like I did). I have my psychology session on Friday and couldn't get an appointment with the doctor until the week after (to discuss the outcome of the meeting), so I'll find out on Friday, all that was said. I feel like I have tonnes to talk about and an hour isn't going to be long enough! I just hate that feeling of being ganged up on and it did feel a little like that in the meeting, so maybe it's me and I'm on a completely different page to everyone else. I'm not trying to be difficult though, I'm being honest about not having a clue what do to with myself to get better, because nothing so far has worked. So do I just accept that and quit trying? I don't know.