Who does the word bedbound belong to?

I often find that people don’t understand what I mean when I or other people say I’m bedbound. I’ve had people suggest my family members should bring me back to my home city, and worse still people used to tell my ex they should bring me to events. All of this despite knowing I’m bedbound. I think there’s a few factors that cause this. One of which is of course that people find it very difficult to understand that being so ill that you can’t move from your bed is possible, but also I think there are issues with the language that the chronic illness community uses. I’ve been struggling to think of a way of wording this for a long time when initially all I could think of was a frustrated ‘it’s my language dammit’ which doesn’t convey my point very well, or the fact that I’m not trying to portray any ‘iller than thou’ vibes, or to leave other less impaired people without language for their experiences. In basic terms the problem is that people who are less severely impaired than myself (or in different ways) use the only language I have available to describe my experience. This in turn contributes to the fact that when I use this language to describe my own experiences people think I’m less severely impaired than I actually am because they’re using these other people’s experiences as their frame of reference.  This issue is mostly prevalent on social media and in chronic illness circles however I’m sure people use it in their every day life too.

Here are a few examples 

‘I’m bedbound’. I had previously assumed that this term meant spending all of your time in bed, but I have heard people use it in many different ways. The two main times I find difficult is when people use the term to

a) refer to a relatively short term period of illness. For example saying that they were ‘bedbound yesterday’ or referring to a period of recovery time spent in bed following a busy day as ‘bedbound’. 

B) Use the term to refer to the fact they need to spend time in bed as ‘bedbound’. 

To me being bedbound is not a short term state. Some people might be bedbound for a period of their lives and then recovery or relapse in and out of this state, but it is not a short temporary state. Using the word bedbound to describe this experience makes it difficult for people who are bedbound to express this without people assuming that it is a very temporary state. I do believe there are ways of expressing the experience (which can be a very difficult experience) without using this language. Examples might be ‘I had to spend all day or *insert amount of days’* in bed’ 

B is a little more blurry. At which point does someone ‘qualify’ as being bedbound? However I do believe that some use this language far too easily. To me somebody is bedbound when they are either unable to leave their bed at all, or they can only do so to walk/wheel a very short distance to the toilet a few times a day. If someone spends their time in bed but is able to walk to the kitchen to get food, to the toilet etc then I’m not sure I would personally call that bedbound. I have experienced times myself in the past where I spent days in bed except for going to the kitchen for basic food and to the toilet using my powerchair, but I did not use the term bedbound because this was not a long term experience, and I was not entirely confined to bed. For those who can do more than this I’ve heard other people use some terms that were helpful such as ‘bedbound except for short trips out’, or ‘bedbound 90% of the time’. Nobody should have to justify their own experience in any way but this first point does make it very confusing for others when for example somebody is up and about at events the next day after having been ‘bedbound’ according to social media the day before. 

‘I’m almost bedbound’

I think there are times when this is very much true for a person but I do think sometimes it shows a fundamental lack of understanding about the experience of being bedbound. I think the main tines I’ve had issues with this has been when people have told me personally this about themselves knowing my personal experience and it has therefore felt like they are relating their experience to mine. It can be very difficult to hear somebody who can walk and leave their home compare their experience as being almost the same as mine because I feel there is a big gap in impairment between this and being unable to stand, sit upright or leave bed under any circumstances. I went rapidly from spending most of my time in bed, using a tilting chair and requiring a lot of care right down to being bedbound, barely able to move and in total darkness. Trust me these experiences feel worlds apart, and even now when  I am much more cognitively able and have more movement, my current experience still feels worlds apart from the days of needing to spend most of my time in bed and feeling repercussions when I didn’t

I’m completely bedbound.‘

I started using this phrase myself to make it clearer that I cannot leave bed at all, but I’ve heard other people use it who can leave bed. I don’t understand the need to add completely as well as the word bedbound of you’re not literally ‘completely’ bedbound. 

‘I’m 100% bedbound’

This has been  another of the phrases I have used and it can be very helpful as well as being usable by other people to describe that they spend a significant amount of time in bed (varying the numbers). However I have heard people use this phrase when they are not 100% bedbound thus making it harder for me to explain my experience. 

Another similar phrase I have heard other people use is 

‘I have *insert number* hours energy each week’ or ‘I have the equivalent of about *insert number* of days activity to a healthy person’s week’. 

This can be a very useful way of explaining your experience to others, but I  feel sometimes people choose an arbitrary low number, or perhaps they are describing the number of good hours (without specifying as such). To put it another way, if someone says ‘I have 10 hours energy per week’ but they are able to prepare meals, walk, complete self care independently, and sometimes leave the house then next time somebody else comes along who can spend no more than 10 hours a week doing any activity whatsoever except lying in a dark silent room tries to explain their experience using this language, people may not realise they really do mean it.

‘I’m out of spoons’

I know of people moving away from this theory for various reasons, one of which is that people use ‘out of spoons’ to mean different things. For example some people have an impairment that relates to one specific function, or that is non systemic for example arthritis in one joint. Use of ‘I’m out out of spoons’ could range right from ‘my ankle hurts’ to ‘I can’t walk any further’ to ‘I cannot do anything but like in a dark room in silence’. People can also use it to mean that they have ran out of the specific amount of energy for the day. It could mean if they go any further they will start to feel unwell, or that if they go further they will begin feeling more unwell. It could mean that if they do more they risk damaging their body. It could mean they’ve used all their energy with reserves to spare, or it could mean they’ve used all their reserves and will suffer for having done so. In this way the problem with common language is when people mean such a diverse range of things.

I think part of the problem is that we have a real lack of language to explain our experiences. It might be really helpful to have one word that explains the need to spend a lot of time resting in bed, but I don’t think the answer to that issue is to use the only way someone who can’t leave bed at all has to explain their experiences. The irony of this is that I actually hate the word bedbound! This is largely due to its similarity to ‘wheelchair bound’. Though there is a distinct difference in that where as nobody spends 24 hours of every day in their wheelchair, some people do spend 24 hours of every day in bed. Really we should not have to justify ourselves at all, but it can be very important to have the tools to explain to people that you can’t leave your bed or home when trying to receive support whether that be to a support worker, on a benefits form, or to friends and family who might otherwise not know how to support you or worse still simply not understand why you’re no longer attending events or trying to hang out with them.

The message id like people to take away from this blog is to think about the language that you use, and whether you using these terms will leave someone more severely impaired than you without the language they need to communicate their experience which can be very isolating indeed. 

Secondary affects of being bedbound

This is a difficult post to write.  Unfortunately I have to admit that there have been secondary issues thanks to being bedbound.  These are things that are difficult to talk about.  I’d like to shake off the idea of ‘deconditioning’,  but of course we can develop  secondary issues due to being bedbound or immobile.  The idea that I am bedbound due to deconditioning is nonsense,  but the longer I stay in bed the more issues that could develop.  I thought I would outline some.  Some won’t be solely due to being in bed.  

Contractures

My legs no longer go straight out in front of me while lying down without pain.  If I am lying on my back they must be slightly bent and I often need to bend them further for comfort.  This is due to tight/shortened muscles.  Worse is that if I am sat up they want to bend to 70 –  90°.  This poses a few problems.  It makes sitting up in bed difficult.  It will also cause problems with using a chair because due to orthostatic intolerance I need my legs up,  but due to this I need to be partially reclined if my legs are up.  

I also have foot drop which is where your feet point downwards. I experienced this prior to being bedbound too but back then my foot drop was floppy where as now there is restriction and pain in moving the foot to a flat position.  This was helped by having a cushion at the bottom of the bed so that my feet couldn’t drop very far but I had to stop doing this when I started getting pressure sores and so now I have a heel pad instead which doesn’t do the same thing.  

These problems are not inevitable in all bedbound people but they have possibly happened due to my inability to have even passive physio therapy to stretch my limbs as well as spasticity and the position I sleep in.  I do what I can when I can but it won’t compare to someone lifting my limbs and moving them for me.  
These problems could also cause issues should I learn to walk again.  It’s another issue to overcome should I get to that point.  In an ideal world I’d have brought these things up with a physio months ago,  but as those with M.E and in particular severe ME will understand,  physiotherapists rarely understand our intolerance to exercise/exertion and so as much as I’d love to be able to see them and say ‘these things don’t work for me,  what else do you suggest?’  I know that in reality they’d likely continue to advocate the methods that would be harmful to my health except now I’d be seen to be uncompliant. Much better to let them forget I exist.  

Popping hip 

I don’t know what’s going on but my hip joint feels uncomfortable/painful sometimes and can be relieved by ‘popping’ it by bringing the knee towards my chest.  This can only be done once and the leg visibly changes in length as I do it so I have no idea what is going on… But since my gp is so unsupportive,  and I can’t do physio  there is no point in bringing it up. One leg also looks shorter than the other when bent.  

Pain from immobility

Pain from various forms of immobility.  In particular my back can get quite painful.  I’ve spent much of the last few years with my arms at either side of me and only moving towards my midline.  It’s only in the last few months I’ve felt able to cross the midline and do things such as hug myself or reach one arm across my chest as a stretch –  so my chest and back have cramped up.  Also my body has spent years continuously in contact with the bed with only a few breaks of pushing myself away from the bed briefly.  The ot I saw recently said that this can mean your body gets very sensitive and could explain the severe tingling pain I’ve experienced when using a hoist sling previously. Even briefly leads to pain for hours afterwards. 

Atrophy

My muscles have atrophied.  I have quite a bit of movement now but haven’t always and since I’m not weight bearing my muscles have atrophied a bit.  This leaves the fat kind of hanging off places. This means I’ve lost some strength so that if I did improve functionally I might not have the muscle available to me to do the things I would feel well enough for. As ME makes exercise and exertion make me ill,  it is very difficult to regain lost strength. Another hurdle should my health improve enough to be more mobile. 

Worsened orthostatic intolerance? 

One of the big reasons I’m in bed is because of orthostatic intolerance.  I just can’t sit up without becoming ill.  But now I’ve been in bed so long it’s inevitable that lying flat will have added some deconditioning induced orthostatic intolerance on top. I know that being hoisted would make me very dizzy and so would need to get used to that,  but how can I know what is deconditioning and what isn’t?  It’s very tricky.  It’s all so blurry that I don’t even know if I am experiencing this, I can just assume so.  

Sleep problems 

I live in a dark room so have little sense of day or night.  I am in bed 24/7. This means sleep hygiene goes right of the window.  It’s a struggle to sleep.   In fact I’m writing this at 5am.

Future incontinence from catheter use 

Before needing a catheter I was partially incontinent despite various treatments.  However due to having had a catheter nearly 3 years my bladder will now only hold a small amount before it becomes painful and releases the contents.  I never planned on having a catheter in this long.  The future plan will depend on a few things.  E.g whether I am well enough to manage pad changes,  whether the incontinence can successfully be contained by pads, whether the incontinence is painful (spasms can be very painful.  Especially if the sphincter clamp shut at the same time),  whether I am likely to experience retention again,  and how likely it is I will experience any improvement. Recently when I had a catheter blockage my bladder emptied around th room catheter  whilst tilt was in place, but would not empty when the catheter was taken out despite spasms, so i expect the retention is still there.  Honestly I will most likely as for a suprapubic catheter as soon as I am well enough.  This is where the catheter passes in the lower abdomen (pubic area) rather than going through the urethra. This will have the benefit of not being anywhere near my bladder neck which means it won’t be able to spasm around the catheter and block it. It also means that there is somewhere else for urine to come out of if there is a blockage (if retention is not too bad) though sadly this also means a chance of not being totally continent. This is something I can live with as it would be more comfortable. 

This post was mostly written a few months ago and I am finally finishing it just now. Thankfully I have now been referred for a sleep systems assessment. I am nervous as it is from a physiotherapist and there is no guarantee they won’t want to do other assessments or insist on physio,  but it would be amazing if I can find ways of reducing contracture, and maybe pain and spasticity by being adequately supported at night. Please keep your fingers crossed! 

Self care for the parts of myself that can’t look after themselves.

People try to remind me I’m trying really hard and a big part of me wants to believe it.  A part of me even feels a sense of pride when people say ‘well done’.  I know logically that I am doing a lot of things to try and improve my situation –  from spending the last year working hard to get a pa system set up that works well,  to my attempts to initiate Dr myhill’s protocol,  to my attempts to manage my energy.  I am trying,  that much is true.  
What I struggle with is that there are a few basic things I find really hard.  These are things that are considered really basic things to help you manage and heal with M.E.. Those things are rest,  sleep and pacing.  I think my possible autism is a big factor in my trouble resting/pacing (though that’s a blog in itself),  and I covered a bit about it in my blog about sleep issues. 
I have tried many supplements and dietary changes.  These are certainly not simple.  Whether it be side effects,  the emotional  impact of switching from veganism to meat eating, or the long winded research and considerations that go in to trialling something new; this is not an easy path to follow.  Whilst I do commend myself for that (and writing it out this way also helps me realise how much of a big deal it is),  there is a part of myself that is determined to tell me over and over that I’m just avoiding the hard work.  All I’m doing is pill popping.  I’m not even cooking the meals myself,  so what are a few dietary changes anyway!?  This part of my brain reminds me that energy management is the pinnacle of management for this illness no matter what other treatments you do.  My brain reminds me of the pages on my Dr’s website that state that nothing else will work unless the basics are put in place. I end up feeling like a failure and like nothing else I do matters (though that’s not how that information was intended at all I’m sure). 

So I need to learn ways of being kind to my mind and taking care of myself… When I can’t take care of myself.  Of being gentle with myself when I cannot do the things that are most healing,  and to try and give myself recognition that I an genuinely struggling with those things and not just taking the ‘easy route’. 

Something isn’t working.  I desperately want to be able to rest better,  to sleep better,  and to manage my energy better –  but how?  I’m thinking perhaps I need to stop putting so much pressure on myself about it,  stop shaming myself,  and stop discounting everything else I do for my health simply because I am struggling with some of the rudimentary skills.  How can I learn to do these things whilst also respecting how hard it is? 

Any advice is welcome.  

Sleep issues – the naughty insomnia

I was inspired to write this blog after reading a blog by ‘the tudors make me tic’. (the name of the blog makes me smile every time due to the play on words) Thetudorsmakemetic.WordPress.Com

I have insomnia.  That’s something I find difficult to say, for reasons that you might not expect.  You see I have what I’ve termed as ‘the naughty insomnia’.  This isn’t the type of insomnia where you lie awake in the dark for hours unable to sleep,  nor is it the type of insomnia where you wake up frequently or sleep badly (though I experience this too).  Instead it’s the type of insomnia where you put off going to sleep for reasons of anxiety and issues with executive functioning.  I feel ashamed when I say I have this type of insomnia.  Because of the fact I struggle to follow sleep hygiene rules I feel like this is my fault.  Occasionally this will be triggered further by someone lightheartedly saying something such as ‘you’ve only got yourself to blame’,  the odd post online of someone saying that this isn’t insomnia,  or even seeing others have success with sleep hygiene techniques.

Previously I’ve called it ‘nocturnal anxiety’ but that is just one of the issues.  Here is a long list of the problems I have with sleep.  

Delayed sleep phase issues –  throughout my life I’ve had difficulty sleeping at a reasonable hour.  I never made it to school on time and I’d sneak downstairs to watch TV when everyone was asleep even when I was 5. I also know that my sleep quality is usually better in the mornings.  I know this in part because I often fall asleep quite quickly after breakfast.  

Issues exacerbated by lack of light.  

Due to severe light sensitivity I live in low lighting with the curtains shut.  The only natural light I see is that whicu comes around the curtains.  It’s not enough to help my brain work out what night and day are,  or to prevent things like SAD. I just don’t get the cue that it’s night time and so it’s time to sleep.  

Anxiety and being triggered 

This is a biggy. I become anxious at night.  Additionally if something happens before sleep or during my pa assistance for the evening my brain and body go in to a state of anxiety.  If something triggers me (even something small) then I can find myself unable to sleep until 5,6,even 11am. My brain starts telling me I have to stay awake because  it’s not safe not to –  except it doesn’t do that in words so I have no way of reasoning with it.  It’s just a deep sense of dread of sleep along with feeling quite awake and/or becoming less able to identify signals that sleepiness is happening.  

Depression –  clinging on to doing things in the hours I am more capable 

I’m more capable in the early hours.  I don’t know how much of it is adrenaline but for example I am writing this blog at 3.40am and although I know theoretically that I’m exhausted,  I’m also formulating sentences and ideas so much better than I would during the day.  Why sleep when my day has contained so little and yet right now I feel able to do stuff?  The motivation just isn’t there.  Of course that doesn’t mean there are not repercussions if I do overdo it!  Like many people with depression feelings of loneliness and isolation are worse at night.  Switching things off makes me feel the most alone.  

Resting during the day

I have no choice but to rest during the day.  Total silence,  total darkness,  lying flat.  Sometimes I fall asleep, sometimes I don’t but i know it disturbs my body’s sense of when it is time to sleep.  

Executive functioning issues – lack of body awareness.  

This is an interesting one as it ties in to my experiences of physical illness.  I am not very good at knowing how I am feeling both emotionally and physically.  I don’t often experience hunger for example (i eat on a schedule),  and I rarely experience tiredness in the form of sleepiness. When I do it gets muddled with the sensations of debilitating fatigue. I don’t experience the normal healthy person experience of feeling tired before sleep and then refreshed after sleep.  In fact one feature of my condition is unrefreshed sleep and I can actually find myself feeling more tired when i wake up then when I first went to sleep. This again doesn’t help motivate me to try! 

Executive function issues – task switching

I also have trouble switching tasks which relates to being neurodiverse. I struggle to just decide to switch to an audiobook and turn the screen off for example.  Part of it is forgetting this is an option because I’m hyperfocussed, but also interestingly its these small transitions that are the biggest ‘change’  related anxiety in my day. My brain often just melts at the thought of it.  If you think of sleep and rest as a task then in the same way it’s very difficult for me to just switch abruptly from one activity to sleep. Something I am working on is transitioning from one task to another.  For example putting a podcast on whilst browsing online,  then gradually moving to just listening before sleeping.  One of the problems with this is remembering to do it.  One feature of neurodiversity and in particular autism is becoming obsessive and hyperfocussed on a topic.  I haven’t had a ‘special subject’  as such for a while but when I start looking in to something I get totally engrossed and can do this for hours.  The last few nights this has been powerchairs.  I know quite a lot about the higher spec chairs available on the market and seating systems available as I’ve researched so much over the years in similarly obsessive streaks.  I do the same with health treatment related things (though I can’t read research). This carries the additional problem of being an emotive topic because I am quite unwell at the moment and a powerchair is quite a way off… But my brain is obsessing about finding something that will eventually meet my needs,  so that I’m prepared (as if that will somehow move it closer) .  

I dont fall asleep whilst doing things

I don’t naturally just fall asleep in front of the screen or whilst listening   to something like others do.  It’s incredibly rare,  no matter how tired I am.  I fall asleep quickly when I am not occupied –  as long as it is timed right.  ‘But this is what sleep hygiene and the no screens rule is for!’  I hear you cry!… Nope.  I am working on it,  I truly am but right now there are many reasons why I find myself online late at night,  some of which I’ve mentioned and some I have not.  Crucially I do not know when that magic moment is when I would be able sleep. My best guess is that I am doing things for several hours after that point but due to my anxiety I’m scared to stop when I won’t fall asleep.  

side effects from sleep medication 

I think it’s possible I’m having paradoxical side effects and they’re keeping me awake after I’ve taken them. Also though I feel absolutely awful when I first wake up on these meds –  more so than previously.  This leads me to need sleep or else I will feel very ill.  This leads to me usually not starting my day until 4pm or 4.30pm as I’ve needed to sleep straight after a (fast as possible) morning routine which perpetuates the cycle of staying awake.  

I hope this blog has given you some insight that not following sleep hygiene doesn’t mean someone is lazy,  and there could be a variety of reasons why they can’t sleep besides the more widely known forms of insomnia.  

Depression – finding things hard at the moment

This was written off the top of my head and so may not be as articulate as I’d like.  

​I’m having a hard time and have realised recently that I’m depressed.  I think I have a natural tendency towards depression,  but I’ve been significantly more so recently.  

The pressure of living in a continual crisis regarding my care has taken its toll.  First it was managing why inadequate care and fighting for more,  then agencies dropping me at short notice,  or the repeated threats to do so. The accusations from agencies that I had behaved in ways I had never done.  Next came managing with temps,  then endless recruitment; then training,  management and retention.  Now more recruitment. 
Im pooped.  I’ve become so used to being in that crisis mode of thinking that I apply crisis thinking to everything care related.  If something isn’t quite right i worry it is a symptom of the bigger problem – a sign I need to fix things.  But I guess that’s more stress than depression. 
The depression has gripped me.  It’s taken the isolation I experience from not seeing friends and amplified it to tell me nobody really cares about me and I will never have a fulfilling life.  I’ve seen the hashtag #ichoosejoy around a lot, and it’s a philosophy I’d love to live by but right now my brain chemicals are all screwy,  and I just can’t.  As someone confined to bed with very little energy and functional ability I don’t do very much.  I wish I could find joy in the things I am able to do.  I guess I do sometimes find joy in the conversations with  friends or music I listen to but it doesn’t feel the same as joy as when I’m not depressed.  When my brain is in its less depressed state these things give me emotional energy, and help me build resilience… But that’s not happening.  They’re more of a distraction from the stress and pain with little moment of feeling the clouds lift,  sometimes even giving clarity but never light.  
My options for dealing with this are limited and that scares me.  I don’t have many people I can speak to about my mental health (though I’m trying as of today with one) though I would never expect a friend or relative to become a therapist for me.  Therapy is also near impossible.  I cannot manage social visits let alone a therapist visit.  I cannot so telephone or Skype.  I tried an online asynchronous chat for therapy but it was high energy for little support.  What support I got felt generic and not really understanding my situation.  Another option would be email therapy.  Perhaps this is worth it occasionally but tricky to do it regularly.  I found a site that does it for £30 for up to 1000 words.  I have written to the samaritans but my email has yet to get through their system let alone receive a reply.  
I wish there was a magic pill to take to improve things.  Unfortunately I have bad reactions to Ssris and don’t feel those are an option for me.  I was told years ago that if I wanted an alternative medication I would need to see a psychiatrist.  That’s not really an option right now.  Aside from the energy this would take,  it could also go very wrong if I didn’t receive a psychiatrist who was understanding of ME/CFS as a physical illness.  There is plenty of disbelief in my social care folder and I assume medical folder already.  I have also committed to trying to stay away from any new medication as I am trying it decrease my toxic load from the many medications I already take.  I realise this isn’t an option for everyone and for some mental health medication is life changing or life saving,  but given the above and the bad reactions I tend to have to new medications,  I don’t feel this is an option for me right now.  
Unfortunately this leaves me feeling lost.  I want to do more than just survive.  I don’t know how to improve my mental health.  
My mental health has also been worsened by sleep problems,  and a string of viruses impacting my physical health.  

2017 – The Big Health Plan

I use an app called wunderlist to organise my life.  After receiving my latest bit of advice from my functional medicine Dr I decided to create a list called ‘Health 2017’. This is a very long list with numerous sub tasks  and notes for different things.  I was going to copy and paste the list but it is ridiculous.  In some cases I’ve needed to subcategorise e.g the section about improving mental health includes lots of different measures.  In other cases the subtasks are far more simple e.g for cbd I have subtasks to tick off for trying different brands,  dosages and combinations.  I’ve tried not to make it too overwhelming, but this list is unlikely to have the satisfying feeling of being able to regularly tick off entire categories.  It will very much be a work in progress and some may well carry over in to 2018. One area which I think will help is that I have tried to add in some baby steps such as trying one pill,  two pills etc with the option to tick this off.  This will also give me the oopportunity for me to take notes and keep records so that if I need to look back on it,  I know exactly what reaction I experienced  

I also have a nice new book with the intention of using it for recording each day things such as pain and symptoms scales,  sleep,  whether I tried a new supplement,  what my activity and rest was like.  I do hope I can keep up with it.  The book has badgers on the front and that’s always a motivation right? 

I said in a previous blog that I was finding it hard that my Dr had onlu suggested one thing.  I realised after that she had suggested many other ‘smaller’  things in edition to all the other things I’m already working on.  Rather than writing out my entire year plan or even just her most recent editions I thought I’d just make a note of the first few priorities on my health to do /records list with a little information about what it is they are for.  

Recover from viruses – pretty self explanatory.  I’m catching everything going around and my PAs are bringing everything in.

Lactobacillus rhamnosus 

This is a probiotic strain that can help with allergy. I’m currently on about 250ml a day and need to get up to 480-720ml. I may reduce my kefir.  

CBD

I already use cbd to help control pain and spasticity.  I’ve yet to hit on the right combination but the hope is that I will find something that helps me reduce my painkillers.  I am investing quite a lot in to this financially currently but will cut back it I don’t get the results I’m after. I am currently using cbd brothers with a combination 9f their cannabis indica and cannabis sativa capsules.  I will be trying the cannabis indica as a paste soon.  Previously I tried their white edition drops but got through the bottle very fast.  I’ve asked them a question about the difference between the paste and drops bar the format and the cbd percentage in the mixture.  I’ve not received a response yet.  

Homeopathic EPD mix 

I’m almost embarrassed to write the word ‘homeopathic’ but I’m willing to try anything that might help right now.  In an ideal world I would have EPD injections to try and help my multiple chemical sensitivity and low level allergies.  Sadly this is not an option as I cannot travel.  So on recommendation of someone else I will be trying this once I am over the viruses.  It contains a large combination of allergens Inc food additives,  mixed moulds and pollens.  The idea is to gradually desensitise the body to those allergens.  I don’t know how it compares to the injections aside from the name but I am going to try it.  I’ve been advised not to think of it as ‘just homeopathy’  and still take things slow so the plan is to dissolve the first pillule in a little water and try it on my skin.  In the interest of feeling like I’m achieving something,  this point on the wunderlist contains a subtask for every pillule added to the dose,  so I can tick them off and feel I’m achieving something.  If this doesn’t work out then Dr myhill’s food allergy drops are a back up plan with the plan of reducing allergic load – though they are food only where as this includes other things.  

Taper off clonazepam 

I know this is going to be super hard as I’ve already started.  I’m down from 1mg to 0.6mg already.  Last time I reduce to 0.59mg I had severe withdrawal so I’m a bit scared but hopefully going slow and picking the right time for my health will make it easier/possible.  My plan is to reduce 5% every  4-7 days  so this could take a while.  It needs to be done because I think it has negatively affected my sleep and general health.  One of the difficult things will be balancing coming off this with trying other supplements.  It may not always be possible to tell what is a side affect to a supplement and what’s withdrawal from clonazepam.  I will have to listen very carefully to my body and mental health on this one.  

Other big priorities for the year include 

– working on sitting tolerance including altering times I do things.  

At the moment I sit up reclined during mealtimes.  This is not an ideal use of my sitting up energy.  The trouble is finding a suitable alternative time,  and working out a position for eating in! Honestly my biggest fear is that I’ll stop sitting up for food and not find another time to do so.  Additionally recently I’ve been more limited than usual  in terms of how high I can sit up and for how long. I have the armchair I need (symmetrikit – though some modifications might be helpfu!l)  and the hoist sling i need.  I just need to get to the point where my body is complying. 

 

– working on PA management and how I can make that take less energy 

Having had a part time PA resign is a blessing in disguise.  I am sad to see them go but also less evenings with 2 people may well save me energy. Another big thing to work on is the amount of energy I spend on verbal and text based communication. 

– working on how I manage stress physically,  mentally and with supplement support (ashwaghanda) 

– sleep,  rest and pacing 

– trying to come off some prescription medications I have been on years.  The first I’d like to try is my bladder med.  

Diet

You may remember from a previous blog that I have been advised to try the ketogenic diet again.  I am giving this some serious thought but my conclusion right now is that I’m not able to take that leap right now, though  I may in the future.  My plan instead is to try and increase my fat content and lower my carbs as much as possible as well as eating in line with what my body says it needs.  Unfortunately I have a lot of body image issues,  especially surrounding my weight and so this is a cause of anxiety for me.  However I do think I need to take that risk (that I may put on weight)  and see how my health goes.  I have already reduced my evening protein by cutting out the meat and am trying smoothies most nights.  The trick now is to get fat in without going over the calories my body needs and still getting enough carbs not to go in to ketosis.  I’m not well enough to count macros so will just have to be gentle with it and go easy on my brain about it all.  

Then a million other possibilities and things to look in to! 

So long 2016 – a year in review (well the treatment protocol bits!)

This year has felt utterly stagnant in terms of any progress with my health and treatments so I decided to type up all the things is tried or continue to try.  I was quite surprised by the results.  I may not have had one supplement help my overall condition in a bit way,  and I may have had a few make me worse….bur things have definitely not been stagnant! 

Treatments tried which I did not continue due to reactions: 

– ketogenic diet (may try again) 

-ciproxin for fermenting gut. 

-uva ursi herb for fermenting gut (may try again) 

Treatments tried which didn’t work but will take time to come off:

– clonazepam  (addictive sleeping medication) 
Supplements I added in and continue to take:

– pancreatic enzymes (digestion) 

-home grown kefir (gut health) 

– home grown Lactobacillus rhamnosus (gut health) 

– D mannose (bladder problems and low level infection) 

– ashwagandha (adrenal support –  adaptogen) 

– elderberry (immune support) 

– devil’s claw (pain) 

– increased cbd (pain,  anxiety,  sleep) 

– increased melatonin (sleep) 

– lemon balm and Valerian,  Chamomile and hops  (sleep) .  

Prescription medications I managed to reduce:

– Buscopan from 6 tablets daily to 0 except occasionally (IBS) 

– clonazepam from 1mg to 0.6mg –  a work in progress (Sleep) 

– stopped cranberry and swapped for d mannose (bladder support) 

Mental health:

– tried 4 weeks of online therapy via talkspace.  I didn’t really get on with my therapist and found the format didn’t work for me. I’d like to try an email format some time in the future.  

– meditation.  Mostly mindfulness but found yoga nidra towards the end of the year. 

PA stuff :

– switched from 4 PA visits a day to live in.  Later added in a second PA visiting each day.  Ending the year with a system in place though at the time of writing I have found out I will need to make some changes.  
Goodbye 2016,  you will not be missed! However perhaps I need to stop thinking of you as being a non year,  since I have still done things! 

Why I only have one diagnosis

Recently I’ve been watching bits of a spoonie Christmas calendar thing on instagram.  One of the questions was what diagnoses people have.  Most people seem to have multiple, which makes sense but leaves me feeling a bit odd that my health is so severe and yet I only have one: severe me/CFS*.  I’ve often wondered how on earth people end up with so many diagnoses.  Here are a few of the reasons why I don’t have many diagnoses:

– my Drs have placed me on many medications without trying to investigate why I may be having those symptoms.  For example,  for around 5 years (until recently) I took medication associated with IBS and yet nobody ever looked in to why I was having those symptoms.  Likewise I take medication for dizziness,  nausea and allergies with no investigation having taken place as to why I need them.  It could all come under the same banner or different ones,  I just don’t know. 

– I have been too unwell to see a specialist for a number of years.  I was due more extensive urology testing but became bedbound and unable to travel.   I have not been able to pursue autonomic testing because for the last 5+ years I have been too unwell for a tilt table test.  

– As above,  I cannot access Drs that cannot visit me at home which really narrows things down and pretty much rules out the NHS.  

– I have to pick my battles because of an unsupportive and social worker.  I cannot bring anything up that could be thought of negatively or misrepresented in my records,  which is most things!

– with regards to my mental health and possible autism: I am not well enough for long assessments and I am definitely not well enough for bringing up past trauma. 

– I used to put off seeing the Dr for most things and hid many issues as a teen /told myself I was just lazy.  Then my health declined and I haven’t really felt able to push them because in my experience it’s very hard to be believed when you have so much going on and then add ‘by the way,  I’ve had these other things going on for 15 yesrs/20 years/my whole life.  (there definitely needs to be less of a stigma around seeing your Dr about non acute health problems or Neurodiversity early on). My reluctance also wasn’t helped by attitudes when I did start bringing things up before they were severe.  

– My ME Dr was of the opinion that those with very severe ME will have fibromyalgia and POTS as symptoms of their ME. He saw no need for additional diagnoses.  Some drs prefer this approach.  

–  The functional/ecological medicine approach is to look at the ‘why’ of illness.  For these reason although I have abnormal test results showing various abnormalities such as mitochondrial dysfunction,  gut dysbiosis/fermenting gut, abnormal cortisol and pancreatic insufficiency,  these are viewed as part of a clinical picture and not as individual diagnosis.  Additionally portraying them as such to the NHS would get me nowhere as they are not acknowledged outaide of that field and the field of research.  

– other health  issues I experience are potentially quite rare and difficult to diagnose.  I would have to make sure I am in a good position to be able to go down that route and advocate for myself.  It could be that despite seeing several neurologists in 2010-2011 I was just seeing the wrong sort and not those knowledgeable in the conditions I may have.  I certainly believe I was fobbed off (Neuro 1 said nothing wrong or a virus that would leave,  Neuro 2 said possible cfs but cfs team said possible neuro,  neuro 3 said ‘you’ve seen quite enough neurologists already’) 

I also believe that the way western medicine is practiced means compartmentalising things by body part and function which means that whilst something may be a symprom/complication of an overarching condition if you see a specialist in that function /body area then you are likely to end up with a diagnostic name for that issue (unless you get fobbed off).  I think this is really problematic in that it stops our bodies being treated as a whole unit.  It’s wonderful and can be very useful (life saving even) to have people who are specialists in a specific function /area of the body but are they really going to know for example how a treatment might affect the rest of our health and our own combination of issues/diagnoses? 
I find it quite interesting that so many people list their diagnoses on forums and instagram. Perhaps I cannot relate fully because I don’t have such a big clinical picture to put out there.  I can understand the use of tags to find people similar to you,  but on the flip side I’ve always felt that diagnosis isn’t everything.  I know this all too well having gone without a firm diagnosis at all for over 5 years! I do think that lists of diagnoses can be quite misleading.  It says very little of how a person is affected and to what degree or the ways in which their illnesses interact.  I wonder if it also feeds in to a culture of competitiveness within the chronic illness community.  I also wonder if due to most of us having been disbelieved at some point whether we feel the need to prove ourselves and almost list our chronic illness credentials when the truth is all should be welcome regardless of diagnosis.  Id like to engage with people on the basis of shared experience –  and whilst comparing diagnosis can be a way of relating to each other  I’m not convinced that listing them is something I will feel comfortable with or understand…. Though I respect others feel differently.  

* I do also have a diagnosis of irlen symptoms and dyspraxia but see these as separate to my physical and mental health.  

Needing PAs has stolen all my energy

​This post was written weeks ago and somehow didn’t get published.  I thought I’d still post it but with the update that i did find someone from a pa finding agency and whilst not perfect it did go OK.  I’m not sure how long she will stay but I’m hopeful I can make it work in the medium term and get some stability.  Keep fingers crossed for me please.  

7 months of recruitment and counting.  7 months and I am now on to PA 14. Some awol,  some dismissed,  some redundant,  some moving on to new jobs or study,  some unsuitable. Some lasted a 2 -7 day trial,  some for months.  

There’s reasons why there’s been so many,  but it does sound bad doesn’t it?  Factor in that 5 of those PAs are my new team (one left to recruit)  and it’s a little better.  Reality is I’ve had temp after temp.  People unsuited to the role,  who could only do it short term,  or who were not interested in the role as it changed when my funding did. That’s 7 months of looking for someone to meet my basic needs, often at the last minute . 14 people I’ve had to find,  meet and train.  9 times I’ve had to deal with someone leaving or worse to take action against them to end their employment.  All in 7 months!  Thank goodness I’ve had help.  I’ve not done any in person interviews. At first I did things by email but then I switched to someone doing a phone interview on my behalf.  

4 -5 of those months were spent not knowing what my budget was so having no choice but to use temporary workers before switching to a more permanent system.  

Now I have to find someone by next week. I’m getting feedback that people are seeing my Gumtree adverts come up over and over again and assuming that I can’t retain staff.  The ads have been up since August when I began looking for permanent staff.  I guess they’ve been up 3 months now and so people must be wondering how many PAs I’ve gotten through since then: one a week? One a month?  ….I feel so defensive about it – that I don’t want people to think I’m so awful people run away.  I can’t post the reason it didn’t work out with the two people I trialled on my blog obviously but it wasn’t my fault.  Sometimes job trials just don’t work out.  

I don’t have the energy to heal.  I’m continually having to work in recruitment,  training or management.  Then when I’m not I’m full of adrenaline or anxious so not resting.  It’s no wonder my health has gone so downhill.  

I’ve decided to come off my clonazepam. I’ve been tapering a bit too fast and having some nasty withdrawal symptoms so am now going to go more slowly (whilst aiming for weeks to months rather than years) .  I’m shattered but have so much to do.  I feel like I work from home and never get  a day off.  The only days I get off are the ones even I just about crash and can’t do any more.  

Wake me up when my recruitment is sorted? Wake me up when this year ends? 

The next step in my healing journey… But is it a step, a leap, or a free fall?

I sent my functional/ecological medicine a very long rambly letter about being stuck,  not knowing where to go next and worrying that everything is making me worse.  

I wrote so many things that I can forgive her for missing some points though I am finding it a little unclear.  At the time if writing I have written back and am hoping her admin staff can answer some basic questions for me.  I’m suspecting it’s a case that by not mentioning certain things (e.g I asked about when to do tests and she didn’t respond) that she is implying things between the lines (I.e either that we do the things listed and come back to them,  we see how we go,  or that they won’t be necessary –  thoufh I hope not the last one).  Hopefully her admin staff will understand her writing style enough for me to get an answer from them instead of waiting weeks (and potentially paying) for a response from the Dr.  

I have noticed that many Drs have quite a specific communication style that I’ve yet to understand fully.  It was interesting to read from my Dr (elsewhere)  something along the lines that she is not here to be nice,  she is here to improve people’s health and that she has changed her style over the years to be more to the point that ‘this is what you need to do’  and not trying to gentle suggest and lead people in certain directions which apparently doesn’t work.  I think the problem for me comes that this bared similarities to the way other drs have spoken to me –  and I can assure you that their advice was not trustworthy.  My gp for example will when presented with a problem claim it is due to me being bedbound, then when I try and discuss what I could do about it,  or (God forbid) give reasons why I don’t think that is and try and give him more knowledge to form a new idea… He can be quite hard line in an unspoken or spoken way.  Either ignoring me and moving on,  or saying something like ‘well that’s what I think and you can take it or leave it’.  This Dr is different in that she welcomes a certain amount of questioning.  She sees her job as finding out why something is happening and helping to improve it at the root cause.  However she is after all still a Dr and I carry a certain amount of post traumatic responses to past medical interactions (with other drs)  that mean I view the whole thing through a certain lens of cognitive dissonance.  The problem with cognitive dissonance is that it is often hard to detach what is true and what is not.  I think that’s probably a blog post for another time. Honestly I’m not sure how a Dr could behave that would make me feel calm about all these things.  Even if they were extra kind,  gentle and reassuring I’d be wondering what this was trying to cover up!  It’s just the way my brain processes these things.  

On the flip side I must remember how much more validating this experience is.  To be told that there is a reason you are experiencing something  is important mentally.  

It’s an odd feeling when you are used to being given an overwhelming amount of things to do by a Dr I.e tests,  treatments,  diets,  techniques ….and then suddenly you are given very few things to do.  I’ll be honest that a big part of me is relieved…. It was so overwhelming having so many things to consider.  On the other hand there’s that niggling feeling of doubt ‘is she giving up on me?’.  I hope that this feeling is nothing more than internalisation based on past mistreatment but other drs and healthcare professionals.  

There is one problem thoufh… A problem I’ve not yet established the size of; the biggest suggestion is something I’ve tried before,  and it made me ill.  How ill I’m not sure because there was so much else going on at the time.  The biggest piece of advice is to so the paleo ketogenic diet.  

Last time I did this diet I experienced tachycardia,  increased resting heart rate,  and increased feelings of fight or flight.  The good news is that I am now armed with more tools to know exactly how to do it correctly,  but it’s impossible to know if that will be enough. It’s hard to know how much of a risk this could be to my health.  After all I did consume extra salt,  I did try for 8 weeks,  i did consume high fat,  and monitoring showed I was mostly keto adapted.  Perhaps’ mostly’ is the key phrase here.