The Spoon Theory graphic

M.E Clinic // My Experiences – Part 2 of 2 // Chronic Illness

Hi guys

Today’s post is part two of two – you can find the first post here.

Switching to ME Clinic Home Visits

At this point (towards the middle/end of 2015) they decided to switch me to home visits and somewhere down the line there was mixed communication.  I was given the impression that it would be more of a living assessment and they would give suggestions on what I could change around the house to make daily life easier, but that wasn’t the case at all!  I actually cancelled my home visit weeks before, as I was due to be moving house shortly and didn’t want to waste their time assessing somewhere I would no longer live.  Once they realised, they told me that wasn’t what the visits would entail and we arranged for my first home visit once I was settled into my new house.

Chronic Illness Spoonie

Home Visit 1

Two women come for the home visits – a Senior OT and a nurse.  They both have very specialised training in M.E.  I’d met them both before, as the clinic actually put on open days once or twice a year, aimed at helping family, friends and carers understand the condition and manage it better at home (really useful!)  The first session ran over to 1.5 hours and was exhausting, but so worth it as it was very enlightening.  They took me back to the very beginning of my ill-health (aged 15) and helped identify precipitating factors such as various illnesses, operations, traumas and stress.  One thing to note – they really don’t mind you being in your PJ’s with messy hair… they’ve seen it all before!

One of the things they said lead me to a lightbulb moment of realisation… shortly before I got ill, I was in a very stressful job.  As soon as I moved to my new job, which I loved and was much less frantic, my illnesses started.  Apparently the body ‘realises’ it can now stop and deal with the years of stress and trauma so it totally breaks down.  It then becomes unwilling to get better, as it has a ‘memory’ of what came before – to put it simply, it thinks that if it gets better, it will be put back in the original, stressful situation.  You almost need to re-train it to understand that the stressful situation/danger/threat is no longer there and it is safe to start functioning again.  Nobody has ever explained it that way to me before, and it makes so much sense.  It’s nothing to do with me consciously thinking that way, it’s the body’s own subconscious and chemical reaction.

Spoonie in Pyjamas

Me in my new uniform – PJ’s!

After my first session, I was left with some homework – I was asked to fill in an activity chart over two weeks, to identify any patterns.  I was also asked to complete a brainstorming type form which looked at my strengths, weaknesses, precipitating factors etc – for example that I am a ‘starter/finisher’.  This means I don’t like to start something and not finish it, meaning I find it difficult to pace myself by breaking jobs down into small, manageable chunks.  Identifying things like this means I can see where I need to break habits for the sake of not pushing myself too hard.

Home Visit 2

My second home visit was yesterday.  I filled them in on a few things I had forgotten to mention the first time (a botched appendix removal and years of recurring infections as a result) and we went over my homework.  As someone who spends the vast majority of my day in bed watching TV (out of necessity not choice!), I was shocked to discover that according to the activity chart I completed, I actually get ZERO REST!  They don’t class reading or watching TV as rest, as it’s still a mental activity.  The only things classed as rest by the experts is guided relaxation, meditation, deep-breathing etc – i.e actively and deliberately resting, not stimulating the mind in any way.  I couldn’t believe someone who spends nearly all day in bed isn’t resting haha!

ME Clinic Newsam Centre Leeds

ME Clinic – Leeds

The outcome of that is that we have set a little goal for me to work on until my next appointment in March.  They would like me to try and do 5 minutes a day of formal rest – we chose guided relaxation as that is something I enjoy and I already have some good aps on my phone for it.  I shouldn’t do it in bed, as my body shouldn’t get a cue that it’s time to sleep.  They’ve asked me to sit upright in a chair, away from the bedroom, if at all possible.  I’m going to do it on the chair at my vanity desk, which is next to the ensuite bathroom.  I thought this would be achievable as it’s next to my bedroom and even on my worst days I can make it to the bathroom.  I will also have my desk to lean on or prop myself on if it’s a day where holding myself up is difficult.

The Spoon Theory graphic

The Spoon Theory

We ended the visit with a chat about my longer term goals – what I would like to work towards achieving (as they know I like me a goal!)  I said I would like to be able to see my friends more consistently, even if it’s only once a month.  At the moment I am barely seeing them at all and it’s something I miss.  My next goal would be able to cook more, as it’s something I used to really enjoy.  My husband often has to cook our evening meals after not getting home until 7pm from a full days work, so it’d mean a lot to me to take that back from him.

My Overall Experience

Overall, my experiences with the ME Clinic in the past two years have been really positive.  Everything goes at a very slow pace, as they have to very carefully and gently implement any changes so as not to cause a ‘crash’ or flare.  It’s much harder than it is for, say, a GP who can just keep prescribing medications until something works.  You can tell the medical professionals have worked in the field a long time, as they have total understanding of the condition, its limitations and the reality of living with a chronic illness every day.  They are also really kind and often humorous, which really puts me at ease.

Costa Hospital Chic

My post-hospital treat!

If you have ME and want to know more about my experiences, please don’t hesistate to get in touch.  I would love to help where possible.

[Edited to add: I have had so many responses and questions that I plan to do a further post answering some of them and providing a bit more detail/clarification.  Once I’ve done that, I’ll add a link to this post.  It will probably be next week though as I’m exhausted!  Thanks to so many people for reading and interacting with me!]

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21 thoughts on “M.E Clinic // My Experiences – Part 2 of 2 // Chronic Illness

  1. MjBee says:

    “Apparently the body ‘realises’ it can now stop and deal with the years of stress and trauma so it totally breaks down. It then becomes unwilling to get better, as it has a ‘memory’ of what came before – to put it simply, it thinks that if it gets better, it will be put back in the original, stressful situation. You almost need to re-train it to understand that the stressful situation/danger/threat is no longer there and it is safe to start functioning again”…… This is VERY interesting indeed!!!!! I have read a lot into brain plasticity and neuroscience, and you are right, the brain does need to re-train itself. Pretty much all those programmes like the lightning process, reverse therapy, gupta all work on this idea. Luckily, we now know the brain is plastic, it CAN be retrained. But for us ME folk, its about recognizing where we have gone wrong and fixing the path into the future. It can be done, there are heaaaps of recovery stories !!!!

    • Katie Cupcake - Life with ME says:

      Yeah it’s the first time they’d ever explained it to me that way, and it really does make sense! Especially since they say most people with ME get it after a bad illness, trauma or accident. It gives me much more hope that I could one day get better! X

  2. hardysue says:

    Hi Katie
    I knew people recovered using Gupta/ Lighting Process etc, but hadn’t understood why, and the process that got the brain/ body to be in this state of breakdown in the first place. Really interesting, thank you .

  3. J Nelson says:

    I can’t travel to my not-so-local CFS/ME clinic and they’re not funded for home visits. The clinic said I’m on the higher spectrum as I can’t do the travelling. So your articles are invaluable, Katie, thank you. I need an Internet-based clinic solution…

    • Katie Cupcake - Life with ME says:

      That’s such a shame that they’re not funded for home visits. Sad that it all has to come down to money. The coverage of ME clinics in the UK seems to be really patchy. I’m really glad the blog posts are helpful for you! I will be writing plenty more about the clinic visits, my hydrotherapy and general ME/fibro issues so I hope it helps xx

  4. ingredientswechoose says:

    Fantastic read, thank you! Ive been dealing with cfs for a couple years but I learned several key things. Could you (when you have the spoons!) please post a picture of the activity chart and brainstorming type form thingy you mentioned? They sound super useful. Or email it? I understand (really really understand) if it is too much!

  5. Eva Sandeman says:

    Hi Katie,

    Thank you for sharing your experiences. I’m 33 and have had ME on and off since I was 7. I’ve never been referred to an ME specialist so I’ve always wondered what they do at the clinics. The way they explained ME to you makes sense, I’ve often felt it’s like the body is afraid to get better. Good reminder too that watching tv/reading is not resting! I also need to be stricter about resting properly!
    Wishing you lots of light and love.

    • Katie Cupcake - Life with ME says:

      Hi Eva! Thank you for reading. I’m sorry to hear you’ve had ME for such a long time, that must be really difficult! I can’t believe you’ve never been referred anywhere after having it for such a long time. I guess some places just don’t have clinics. I’m glad my post helped in some way 🙂 Haha I need to remind myself most days about ‘proper’ rest and still forget! xx

  6. meoowmeoow says:

    Thank you so much for writing these posts (parts 1&2) they’ve made very interesting reading …what a shame that your clinic experiences aren’t available UK wide!
    A clinic if this sort, with home visits & understanding nursing staff could be so invaluable to all ME sufferers.
    Sending many spoons to help you with your blog 😊

    • Katie Cupcake - Life with ME says:

      You’re very welcome – thank you for reading! Yeah I’ve really realised how sparse these clinics are across the UK, and of course most people with ME can’t travel 40 miles for each appointment, we really need more clinics xx

      • meoowmeoow says:

        That’s the truth chic …& more training for GP’s wouldn’t go amiss either! I had one GP refuse to send me to a consultant for diagnosis because she reasoned that both she & I knew I had CFS, so what was the point because ME was the sane as CFS! It’s very energy draining when no one else is fighting in your corner x

  7. Donna // February Stars says:

    Great post Katie and I have every faith you will see improvement from putting more relaxation into your day. For a long time I didn’t appreciate just how much mental activity was wearing me out.

    I find the concept of baseline very helpful. I thought about what I could manage in a day and did half of that. It meant doing pretty much nothing in the early stages but I found peace with that knowing it was temporary. Change was small and slow but overtime my baseline had increased and I can do more. Things that used to be a massive deal for me, I can manage more easily now.

    Good luck with the rest of your appointments and all the best for your recovery 🙂

  8. Jenny says:

    Hi

    It’s interesting to hear about experience of different Centres. This sounds a bit different from my experience. Pacing is definitely the best activity management strategy we have yet. Even after 19 years I still find it nearly impossible to rest my mind though, unless I actually nap! I’ve tried various relaxation techniques but find after lots of repetition my mind can’t concentrate on them, or it gets too used to that activity. I have to move on to something new.

    I’m not sure about “Apparently the body ‘realises’ it can now stop and deal with the years of stress and trauma so it totally breaks down. It then becomes unwilling to get better, as it has a ‘memory’ of what came before – to put it simply, it thinks that if it gets better, it will be put back in the original, stressful situation.” This doesn’t sound right to me. I think there’s a tendency for some people to need to neatly package whatever your behaviour was before getting ill/relapse. It is more common for people to say they were stressed at the time they got ill (though I take this with a pinch of salt too).

    There seems to be subtle guilt inducing, patient blaming in this type of explanation, so it is worth questioning. Almost everyone would say they were either stressed, or not stressed after previously being stressed, when they got ill. But so would almost everyone who didn’t get ill! People are often stressed but most people don’t get chronically ill. We’re not to blame for getting ill.

    There is some recent research (the Naviaux study and similar from the Open Medicine Foundation and Fluge and Mella in Norway) that would support a theory that at a cellular level the body perceives danger to survival. This is usually the virus triggering ME though (*not* more general life stress beforehand, but more general stress can make coming down with an infection more likely). The body goes into a lower functioning state to maintain survival, a bit like the safe mode when your computer has a malfunction. This could explain the lower metabolic state found in ME. What isn’t clear yet is whether this is a misperceived danger, and it is safe to bring us out of it with medication and diet, or if the body is right to put us into this state and the original danger still needs treatment. Either way this doesn’t seem to be the same concept.

    • Katie Cupcake - Life with ME says:

      Hi Jenny, thank you for taking the time to read and comment! Yeah from the feedback I’ve had, there’s a lot of disparity between different ME Clinics – even just within the UK! I know exactly what you mean, it’s much harder to rest the mind than the body. I feel the exact same, I use a few guided relaxation apps but you get sort of ‘immune’ to them. I try all sorts of different things too. I’ve just done a ‘Yoga Nidra’ session tonight that was v relaxing. It’s essentially ‘yogic sleep’ so a guided breathing and relaxation with a tiny bit of stretching but nothing very physical. Felt like I’d had a nap afterwards!

      I’ve had quite a few people say they don’t agree with the bit about the stressful situation – it seems to be quite a controversial opinion (the clinic’s opinion rather than mine, although it did make a little sense to me on a certain level)! That study sounds very interesting, and a more likely explanation. I wish we had more funding to find out the root cause and what is actually going on with us all! Fingers crossed for the not too distant future xx

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