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. 

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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.  

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.  

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.  

Incessant Loud Noise – a poem 

​My PAs catch the train to work here 

It stops just down my road

And though the trains are loud 

For the tracks run so close to my window 

They are muffled;  

not only by my earplugs, but by my mind,

which has long distanced itself from their purpose;

Choosing to treat them more like the background 

hum of my fridge, or a dripping tap

Irritating-  but of no significance to my own day to day life. 

I’ve peeked outside my window as it gets darker 

(for this is all the light I can bare) 

And am always surprised to see people walking,  

boarding trains and crossing the footbridge.

Just as I forget they are there,  they do not know I exist either.  

Perhaps one day I will join them on the platform 

once again able to tune out of the lives inside these buildings,  

and relearn the true meaning of this incessant loud noise.

I can’t seem to get this to appear without double spacing,  so sorry about that. I’d be grateful for any other advice about how to format a poem such as this in general with things like punctuation and where each new line should start.  Thanks

General update

My health is worse in some ways than it has been in a long time. This is primarily due to the fact I was served notice by my care agency and had less than 2 weeks to recruit. I’ve been going week by week sorting my care, and alongside actually getting used to and training new people as well as a totally different format of how I receive my assistance, it has been utterly exhausting. I am hopeful to keep doing things the way I am, but I just don’t know as I am waiting for a care plan. I could end up back with the same system that kept me in fight or flight (not that I’ve successfully left fight or flight entirely anyway).

I trialled the ketogenic diet for 2 months. Dr Myhill had recommended it twice by this point. I’m sad to report that it’s just another thing that made something worse. My heart would randomly becoming tachycardic, or just generally have a big heart rate increase as soon as I tried to do anythng. I’m currently struggling to work out how to increase my carbs without adding in too many things that hurt my gut or make the fermenting gut worse. So far I’ve been having butternut squash, 90% dark choc, carrots, oat cakes, and dried figs. I would like to stop the oat cakes and minimise the butternut squash….but it will be tough getting enough carbs in to stay out of ketosis. I’m not sure what my future plans are with Dr Myhill. All I know is I’mnot well, and the last two things she’s recommended have done more harm than good. I don’t know whether to get back to her asking for advice, or just go straight on to getting tests ordered. She wants to test for EBV. I don’t know if I had a viral onset. Yes, I did have viral symptoms when my health crashed in March 2010 which I originally saw as the start of my illness, but EBV NHS test was negative (apparently that’s not too uncommon). I also want to try and treat the fermenting gut with herbs instead of antibiotics. I’m scared though after what happened with the antibiotics. The pain in my hands and elbows has decreased a lot recently, but it’s still there. I still feel like the antibiotics did some damage. I don’t believe it is just a ‘herx’. This would mean Uva ursi and plant tannins but the plant tannins Dr Myhill recommended contain casein so I don’t know if I should go with those or switch to a similar one without which does not advertise itself as having the same affects on the body. It is very confusing. Perhaps I should consult dr Myhill before starting. Right now part of me feels like just doing it alone for a bit.

I emailed my GP 10 weeks or so ago about my bowels. He has finally gotten back to me and we are just trying to work out a date for him to come out with the district nurse. This scares me. There are several health issues that if I had a supportive team, I would bring up – but I don’t feel like I do, so I keep quiet about important issues. I just hope they will be helpful about my bowels, and also that they won’t be pushy about why I’m not moving forward. I’ve had an awful year if I’m honest. I’m always hopeful that this will be the time that I have the energy to give towards workign on sitting up, but then it is taken up by something care related usually. If I can get my current PA care system working long term, then I think it will really help me heal – although right now I’m so damn exhausted that I just don’t know when that will happen.

This week’s drama is that my bed is broken and need replacing. Problem is that I can;t get out of it. I’ve been so thankful to have PAs and not carers at the moment because the chain of events that needs to happen to get me in a new bed is so complex. It involves:
District nurse prescribing a new bed and mattress
Community equipment store providing the bed and mattress + setting it up alongside my current one.
999 being called and asked to come and move me in the next few hours (apparently this is the only way).
The equipment store coming the next day to pick up the old bed.
I just hope it doesn’t affect my health too badly if I’m honest.

Anyway it is very late at night and I really should try to sleep.

I have some things in my journal that I have thought I would like to share, but then again they feel too personal. It’s difficult to balance this blog and how honest I want to be.  I will at the least post some poetry soon.