ME/CFS clinic appointment

This blog post was written using Dragon dictation for iPod. Please be patient if you find any mistakes in something doesn't make sense. I will tryand correct this time that at the moment that is not within my abilities.

This week I saw a chronic fatigue syndrome clinic. This is the second time I have seen such a service that my first time at this particular one.

The experience was… Interesting.

The first thing that happened was that when I arrived and turned the corner into the consultants were in the consultant said oh my goodness... This didn't strike me as a particularly positive start to be appointment to be honest. The consultant had some very interesting ideas about what causes chronic fatigue syndrome or M.E as it is preferred to be called by sufferers. The appointment lasted around one hour and I felt as if I was being talked that for the entire time,with no attempts to learn how my illness facts, what symptoms Et cetera.

The consultants series on M.E/CFS word that it takes three mechanisms to cause M.E/CFS to happen. In his opinion these were as follows;

One. The genetic predisposition to the conviction.
Two. A trigger for example a major life events, a virus, another illness or et cetera.
Three. Particular mental state was he called it a 'fertile mind. . .

I tried to bite my tongue . I completely disagree with this theory, which I have heard mentioned similarly before and know other people havebeen told this at similar clinics as well . I did however, feel as if I was being backed into a corner. It was clear that his intentions were to get me to undergo a cognitive behavioural therapy and/or graded exercisetherapy . I managed to quickly got any thoughts are graded exercise therapy to rest after stating that I thought it was too much risk to my health . He then turned his attention back toCBT.

I try my best to remain strong about illness related things that deep down a big part of the grief process for me has involved? So. Question myself repeatedly about whether or not what I'm experiencing is true whether anything I am doing has any bearing on the end result of my impairments , and whether I am doing the right thing in terms of self management.

The more he spoke at me, the more grounds down Ken, and also the more fatigued I became which meant I felt as if I had no sense to fight. The consultant was nice in his demeanour; this actually made things worse! In hindsight, it was all quite manipulative. It was repeatedly implied that if I am to go see T then this will be a cure. He spoke of other people who were also in wheelchairs and one lady in particular you apparently after CBT was able to stand and walk again because she learns what the triggers were . Apparently as soon as she started think thinking of the difficult thing that had caused her mental state to cause cf S, she immediately started having symptoms again and was unable to walk. The consultant asked how I could believe that this illness dance not have the psychological component switch the only thing I can say is that perhaps for these people there was a psychological component that from me, I do not believe there is!

Having any major life events, including a chronic illness is going to have an effect on your psychological well-being. This is not the same as chronic than being psychological, and I am fed up of being made to feel as if acknowledging this (which in my eyes is very important in terms of the grief process ) means acknowledging that your illness has a psychological component. There is an important interaction between the two, but this is not the same as cause and effect.

I am conscious that I am waffling at this point! However, this was very frustrating and so in some ways it is hard not to! Nonetheless, I will try and summarise a little better.

The doctor that I just saw gave many bits of 'evidence, but apparently proved that not only was this a physiological illness but that's the only way of treating it is actually the psychological treatments.

These evidences for this included that all cells in the body and brain come from the same original song and that's how can we define their mind and body divides and that's how could an illness effort purely physical. Also, that mental state has a big impact on the new system and so this improving the mental state will make the problems reverse and thus you will get better.

Apparently physiological treatments can only provide a patch over the problems and only psychological treatments such as cognitive behavioural therapy will be able to cure your illness. It is important to note at this point that he gave no mention of any physiological treatment at all. Whilst he acknowledged that there was a shame that was physical cure, you did not acknowledged that there was any need for one.

I can now see many faults in all of his arguments , but at the time this was a lot more difficult.

The end result of this appointment was me being backed into a corner and say that I would consider CBT and let him know. I was very much made to feel that I would not be offered any other treatments for my symptoms unless I was happy to comply with nice guidelines treatment. It was also implied that complying was synonymous with recovery, and that if I was not recovering that meant I must not be comply . Thankfully, just as I was leaving the waiting room I was told that he would forward my referral for a symptom-based treatments. I was not told what these were! All this of course, just as he shook my hand and told me it was nice to meet me and once again I was a very nice gentleman. This, along with telling me I was an intelligent guy formed a large part of his demeanour in the appointment.

I think it is incredibly unfair, to put people's health in danger by suggesting treatments that are widely discouraged by nearly all M.E charities . It is also completely unfair to give people false hope of recovery. I am sure some people do improve with these therapies , however in the grand scheme of things there are not many and it is misleadingto tell patients (as this consultant did to me) that the U.K.'s treatments are the only ones in the world that seemed to work.

So, after that appointment I guess I'm not any further forward aside from maybe (because it was never discussed fully) I will end up with a diagnosis of M.E CFS. Other than that, I now just have the option between undergoing therapy that could make me physically worse or alter my grieving process, or arguing it out with the M.E/CFS team and my GP that this treatment is unsuitable, pointless, a waste of my time and their resources as well as being potentially dangerous. This will no doubt have another impact on my medical notes in the future. Fun times!

been a while

The main reason I haven't written in this blog very much is because I've generally felt as if I would end up writing hte same thing over and over again. Grief is hard. Justifying grief to yourself is hard. Grief for the things I love but am unable to do, grief for the future that never was, grief for the future that remains uncertain.

I am trying to get back in to music at the moment but it feels painfully slow. I want to write and play music in any way but what I want to do most of all is play my trumpet. It's my instrument and I can't accept that it is gone from my life.

I'm finding it hard to convince myself that I am doing things right. I don't know if that's part of hte grief. Maybe if I can convince myself that I am doing something wrong, then I will eventually put it right and it will be fixed - rather than accepting that this is how things are right now and for as long as my body decides this is how things are going to be.

I have experienced some progression recently in my hands and arms. It is hard to know what has caused this though it is possible that getting an ipad was the tipping point. Apparently too much touch screen is bad! It has been happening for a while though.

I am yet again facing hte decision of do less vs more help. It's not so much about pride for me. I see others around me who need help and do believe they should take it and fight for it. For myself though, I look at others with an ME/CFS diagnosis (which remains my most probably diagnosis) and see them trying to get 'better' - attempting to cut back activity to improve their health. I try instead to maximise what I have right now. I stay within the remits of my health but don't follow the '50% rule' (whereby you do 50% less than you could do in order to allow your body to heal and/or not damage itself). But, I don't see how I could live like that. I could never shower (even with assistance), would never leave the house, would use the computer minimally, rarely if ever leave bed etc. I don't understand how I would 'choose' that life for myself. That life should never be a choice, only ever a necessity.

I think I need to trust myself more.

I do know for sure that I need to get better at self care. For now I have 3 main things that can be done/need doing.

- accept more help with personal care
- improve sleep patterns
- decrease time talking/actively hanging out with people - even PAs and partner.

I'm hoping the above will save enough reserves that I can use my resources for the activities that matter most.

old friends and carer troubles

I had an old friend come and stay with me recently.  We were very close before I moved away for uni but haven't caught up or spent that much time together for almost 6 years!  

Having someone from that era of my life here really brought home how much my life has changed in the last few years.  I pushed myself far too hard that week and yet didn't come close to doing as much as I would have done were it not for being chronically ill.  For example, I couldn't choose to cook us both dinner - I had to ask P to do it and there were several days where I had to leave P to go and explore whilst I stayed home in bed.  This was frustrating because some of the things they wanted to do, I would have enjoyed as well! 

I'm not really sure how to describe it but it really brought it home how much things have changed.  I know that there is much more I could be doing to manage my energy but I honestly just kept forgetting because this wasn't something I had to factor in to my life 5 years ago!

My attempts at recovering from the visit were disturbed by a sudden, urgent need to change my carer - something I was hopeful I would be able to put off since I will soon be employing PAs privately.  Whilst here, P commented about how cold my carer is but they also witnessed 2 incidents which just spelled out how ridiculous she is as an employee.  The first was her making a 45 minute long personal phone call on the balcony whilst the hoover was running on my sofa (to sound as if she was working).  This is obviously seriously taking the mick.  There was also another incident which was pretty disgusting, out of line and well....unbelievable.  So much so that I'm going to save posting about it here.  I am ok, safe etc.  It was not abusive towards me. 

After this drama we phoned the out of hours department and had her visit for the evening cancelled.  Unfortunately this resulted in issues with care for several days.  Thankfully 2 other friends came to hang out, help out if necessary and generally keep my mental health somewhat stable.  They've now gone and I'm hoping I'll be in the headspace to balance rest and working through my endless to do lists over the next week or so.

The carers I have at the moment are ok-ish.  Unfortunately they also take up far too much energy by not understanding most of what I'm saying and/or asking for constant clarification.  Speech and communicating are difficult when I am particularly unwell so this is not particularly useful!

I had intended for this post to be about several other potentially more interesting things too but am finally becoming sleepy so will attempt to write more another time.  

Dear carer....

Dear carer,
you've been working with me for 10 months now.  This is long enough to know little things like to change gloves between helping me go to the toilet and getting me a drink.  You should have known how to turn people before you even started working with me.  After over a hundred showers, you should know little things like to move things back so that I don't have to struggle to reorganise the bathroom everytime I need the toilet.

p.s please wash, paying particular attention to your feet (or at least leave your shoes on) and stop taking personal calls whilst here.

pp.s I know your fiance sits outside my flat waiting for you some evenings.  This is not ok.

Another complaint time?


On a more positive note, my care budget has been agreed for certain.  I will be making some calls tomorrow but I already have some interviews set up.  Hurrah!

Trip to thorpe park

It's really late but I'm full of adrenaline (and sugar, but that's an issue for another time).  I can't sleep so I thought I'd write about my recent experience going to thorpe park.

The last time I went to a theme park was several years ago.  I was partially mobile and it was the first time I ever used a wheelchair!  This definitely helped my relationship with wheelchairs as I could see what could be achieved by using one.  This was just over 2 years ago.

This time was going to be different.  On the one hand, it's taken almost those 2 years to get my mobility back to a point where I can move my legs reasonably freely.  On the other hand, any form of weight bearing/being upright still has massive ramifications on my health.  But, I really wanted to go so I duly planned a trip with just one other person so that htere wasn't too much to think about/plan and I could use all my energies as a 'test run' to see how my body responds to rides now.

Planning this got a bit stressful when I realised that I would need to bring letters of proof that I couldn't queue.  DLA is not enough apparently.  Neither is the fact the queues are not wheelchair accessible so I can't get in them anyway!  Another major factor in me only going with one person was that you can now only have one person jump the queues with you. There really needs to be a system for when people go in a group.  They also only allow one disabled person on a ride at a time due to health and safety!

As per usual, accessibility was the biggest issue.  Some rides can only be accessed by stairs, some need to be climbed in to (rather than transferring) and others are made inaccessible by the complex walking routes required to exit in an emergency with no evacuation chair available.  I barely slept the night before as I was trying to work everything out and stressing that I might spoil my friend's fun by not being able to go on anything.

We arrived at the park at about 12pm giving us 5 hours.  On arriving we discovered that the following rides were shut:-

- Nemesis Inferno

- Collosus

- Samurai

None of these closures had been listed on the website in advance.  This only left 2 big rides I could go on in terms of their safety procedures: no way out and stealth.   I was pretty gutted.  

On the day I decided that it was worth exhausting myself getting in and out of log flumes and the like and in many ways I wanted to make the most of the recent increase in mobility.  So, we went on 

- storm surge

               - Like a helter skelter water slide with inflatable dingies.  I had to walk about 1.5 metres to get in to the boat and then throw myself in (thank you gravity!). To get out my friend helped with my legs.

- loggers leap

              - This exhausted me.  They tried to slow the boats down but this just meant I was upright longer so dysautonomic stuff set in and made me feel rough as hell.  It was still fun though and we went on it again later (twice in a row without getting out :p)

- No way out

             - you can do a standing transfer in to the ride but my friend had to drive my chair back out and towards the ride exit because the ride starts and ends in different places.  This was a bit embarrassing as they had to hold the ride both at hte start and end.  The ride itself was good but in terms of my impairments very very challenging.  The ride is a standard carriage with just a bar over your lap.  My sitting balance is pretty poor so I felt as if I was falling out of the seat.  In the end I had to sit with my arms crossed over my lap with one arm holding the grab rail and hte other holding on to my friend's arm.  I probably looked like I was terrified but in reality I was stopping my arm from spasming out of the ride carriage!  

With the exception of stealth, the other main rides require you to be able to walk at least 25 metres if the ride breaks down.  I can't walk anywhere near 25 metres!  But...being the adrenaline junkie I am and because my favourite ride was broken (collosus) I decided to risk it.  If it broke down then I'd walk, crawl, bum scoot and beg for piggie backs to get off....but realistically I was hoping to god they didn't break down.  So we went on:

- The swarm

                 - This ride was absolutely incredible.  I went on it twice in the end.  amazingly no one asked if I could get off in an emergency.  The seats were incredibly supportive and perfect for me as they were angled so offered enough support.  I could also loop my arms in to the chest strap meaning they were safe from spasm.  The only access issue getting on was that I needed someone else to do the buckle as well as my friend needing to push me up in to the chair (it was a bit high).  I was in hysterics for a large amount of the ride because every time the carriage inverted my legs would spasm out at 90 degrees so all I could see was these legs shaking up in the sky!  Was amusing watching it on the video footage they had afterwards. 

After this we decided to go on nemesis as it had re opened...but got there and noticed there's a massive stair case to get up to the ride....so no can do.

We decided instead to go back towards stealth.....but it had been closed.

So we decided to go on saw (another 25m+ evacuation route)...but that had been closed too!...this is how we ended up going on swarm twice.

I'm yet to know for certain what the repercussions of such an exhausting day out will be but all in all it was a very enjoyable day.  However, I was very disappointed that so many rides were closed when we arrived with no notice + that others were closed through out the day.   I'm also pretty annoyed that rides completed as recent as spring 2012 could have such inaccessible evacuation policies meaning that although the ride itself is accessible, health and safety policy gets in the way.

things carers shouldn't do (but from experience have!)

- you should probably know what a sandwich is.

- it is surprisingly simple to avoid spraying someone's genitals at full force with a shower head.

- Being 4 hours late is not ok especially when the person you're working for hasn't eaten or been to the toilet.  They need you there for a reason.

- 'I'm going on a night out' is not a good enough reason to turn up over an hour early.

- Pads do not go in the recycling (and your kids nappies shouldn't either!)

- If at first you fuck it up aim not to fuck up again, or again or...

- Let the person you're working for know that you have heard them.

- Remember the tasks you're asked to complete.  If you forget, ask.  Don't just leave.

- Don't walk away unless you're sure you've finished being spoken to.

- You have keys for a reason. Remember them and don't stand outside banging on the door for 40 minutes if you forget.  It won't help.

- Think about portion size.  Is 1 and a half tins of baked beans really necessary for one person?

- Talk to the person you work for.  Ask them how they are. Seeing someone 3 times a day who only stares at you is pretty isolating.  This will also make your job easier.

- Don't shout or insult the person you work for.

- Don't laugh at the person you work for.  If you can't help it then at least explain why.

- Don't fall asleep on the job.

- Wear deodorant.

- If your feet keep getting wet, wear more suitable shoes or shoe covers - don't take your shoes off in the shower.

- How Mrs Jones likes her back washed is irrelevant.  If someone says you're hurting them, listen.

- Avoid terms like 'change you', 'dress you', 'shower you' etc.

- Your mortgage and family problems are your own business.  Your client is not a counsellor.

- Turn your mobile phone off.  If you have to take an important call then say so.  Don't just stand arguing on the phone in front of a client.

- Do not judge or guilt trip your client about their disability and how hard you perceive they are trying.

- If you break something, apologise - even if you don't think it was directly your fault.

Rarr, just rarr.

Tonight I am incredibly angry and frustrated.  Everything that I do to manage my own impairments and over all health is judged by the medical profession. No matter what I do, it will never be right.

I still have no diagnosis.  I pretend this is ok but it isn't.  The more time goes on the less likely ME seems (my provisional diagnosis).  I want and need to know what this is in order to deal with it, in order to feel as if what I'm doing is the right thing.

I know that I shouldn't need validation for how I manage my own life but do I really deserve to be constantly judged?

It occurred to me the other day that my follow up appointments at the gender clinic are half an hour - more than double that of the first appointments I've had with each neurologist I've seen.  At my last gender clinic appointment we mostly discussed how the psychiatrist liked my shoes and coat and that the tories were a bit mean and yet in a 10 minute outpatient neurology appointment a neurologist can supposedly change my entire medical record and make me sound like it's psychological and I'm resisting treatment.

If you don't know what it is, how do you have any basis for telling me how to manage it?  It's my body and I know it best yet I am made to feel as if every single decision I make about how I pee, shower and move etc is somehting that warrants judging.

No doctor seems to understand how my symptoms interact - just that my walking can't be severe enough to use a wheelchair.  Aren't they supposed to understand that walking is about more physical processes than just putting one foot in front of the other?  'Someone else is dealing with that I'm sure' is not an adequate answer.  Neither should you make any judgements about me without taking in to consideration the whole of my health.  Not least anything as damaging as suggesting it's psychological/psychiatric.

I have such mixed feelings about everything at the moment. I had a massively triggering conversation the other week about conversion disorder that has just thrown me off balance.

I've stopped self propelling which freed up a few 'spoons' which i used a few of on walking.  Except even though the fluidity of my movements seems to be improving, I actually feel more ill.  I'm not going to completely discount the fact my mobility might be improving but I do need to take better care of myself and not just use it as a means of proving things to myself/self harm.

I just wish I had answers.

I also need a GP that's willing to help me out in terms of letting me try various treatments.

My sleeping pattern is completely messed up.  Why does everything just seem so horrible at the moment?