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.  


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.  


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! 

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.  

Therapy and other bits

I’ve started therapy…. Sort of. It’s an online service where you type messages and your therapist pops in twice a day to answer.  It is paid for.  I got to the point where I felt totally overwhelmed so I’m hoping it will help.  I’ve had to be clear that I’m not seeking any form of ‘treatment’  at the moment but that I just need a space to bring things to and to be led therapeutically by that. I know I need long term therapy,  and I know that some of that therapy will involve ‘treatment’  and a lot of hard work,  particularly after I finally realised at the end of last year that I have been showing signs of PTSD for a long time,  and that many things I’ve experienced WERE traumatic.  I’ve scooter around things so much before… For some reason it mattered to me that I could say that a person or institution had been abusive,  but not that I had been abused.  I could say something felt traumatic,  but not that it was trauma. 
 I’m not well enough for full on therapy right now though.  One day I believe it might help me psychologically but also have knock on affects on my physical health.  It’s early days though.  I’ve only just had my first opportunity to let rip.. So we’ll see.  Will also have to see if my bank balance can handle it as I have been struggling managing my finances recently.  For a bit of perspective I can’t do in person appointments,  Skype,  phone and even IM would be too much for me.  

In other news I’m sadly down a few PAs. Things didn’t work out with one live in PA,  and so I had to end things.  I also thought I had my part time rota sorted out but then my main part time PA pulled out to concentrate on studying.  Oh dear is all I can say.  Honestly I am quite concerned about the impact having so much to do will have on my health.  I also currently have a virus and could really do with some time to just rest, but I’m behind with some things I need to do legally so I just can’t.  That said I am very concerned about the way my health and functioning are going downhill on a weekly basis.  I honestly don’t know how I will get through this. 

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.

Where I’m at

I’ve been struggling to write on this blog for two reasons. the first is illness. I’ve not been doing too well. The second is feeling totally overwhelmed and just not knowing where to start. I’ve been feeling a lot of emotions that I am starting to find the ability to name, and so I will use that as the basis for this blog.

I am grateful that I am no longer declining. For the first 4 years of my illness I declined fairly rapidly, in terms of how ill I felt, at what level i functioned; and more frighteningly – a rapid progression of physical impairment. It felt as if there must be a regular neurological attack that was causing various distinct impairments to emerge. I find it difficult to relate to the word ‘relapse’ as used in the ME/CFS community (something I want to write about in the future) because for me ‘relapse’ used to mean ‘something broke’. leg function, arm function, bladder function, swallowing, orthostatic intolerance. All of these were distinct events, and they were terrifying. In the last 18 months yes I have experienced crashes, set backs (things others might even call a relapse) but I have not had a distinct loss of function like this, and for that I am eternally grateful. In fact, my arm and leg function has improved tremendously. I think this is largely due to the enforced rest of lying down and not transferring in to my wheelchair. weight bearing and exercise was (and probably still is) a major trigger for periodic paralysis episodes for me to the point where these episodes blurred in to one big overriding physical weakness and loss of function. I do not know as yet if any of these problems have in fact been partially healed, or are just lying dormant until I weight bare again. I suspect a mixture.

resentment and grief – an often indistinguishable duo.
So so much resentment. Some of this is ultra personal and relates to things that have happened in my life – namely the break up of a 3 year relationship. This is not the place to give details, but I think it is fair to say that although I am grieving, for personal reasons this grief is often indistinguishable from resentment.

I feel resentment and disappointment that in the middle of January my health declined pretty quickly after I started the antibiotics for fermenting gut. I will write more about this another time – but right now I am struggling with having lost so many opportunities and that this big treatment opportunity has so far just made me ill.

I feel resentment that I have been ill for so long.

I also feel resentment about the way I am having to live my life due to social services and the NHS. My life is more difficult because of this and it is hard not to be angry, and bitter, especially when social services are doing all they can to ignore me. I’m still waiting for a response to a 14 week old complaint (response time should be ten working days)

I am hopeful still, but I find this has its own problems. How much is it reasonable to hope for? By continuing to hold on to this hope I simply cannot accept my life as it is – and emotionally that is really hard. I find it hard to just enjoy the bits of life I can, when I don’t know how much more is out there for me. after the break up and the issue with the antibiotics I no longer know what I am hoping for either.

The relationship break up and my health decline has turned my world upside down. I do not know what my future holds. When you are in a relationship you can look towards certain milestones like moving in together. When there is a central person in your life it is easier to imagine improvements because I can imagine myself in a restaurant with my partner for example. Suddenly I am having to replace partner with an unknown friend. I know I will have people to share these moments with, but I don’t know who. This has been made worse by the sacrifices I made to make the relationship work. I rarely saw my friends because I didn’t have energy for both, so I made the decision to prioritise my partner – so now I have been having to build up a brand new future on uncertain terms. Meanwhile I’ve not been well enough to see friends all that regularly anyway.

there is also uncertainty about where my health is going. How much more can I get for myself? How can I imagine a future for myself when I don’t know what my health will be like, if my social care will improve etc. I just can’t make any plans.

Fear and internalised guilt
Guilt that I am so ‘well’ and yet not out of bed. Guilt that I am not doing the right things for myself in terms of sleep and rest.

Fear of the unknown. Fear that this is it and fear that it is not. Fear of a change even if that means improvement because that means adjusting (although obviously Id love this) and higher to fall from. Fear that grips my every time I experience symptoms that are worse or reminiscent of worse times. I will write about this more another time…but it is very frightening to be thrown back in to a flashback of how bad things were.

and that is where I am at. Trying to build a life, with my eyes shut and not knowing what tools I’m working with or even whay I’m building. But I’m still trying.

Important things I’d like carers, social workers, and care agencies to know


Trigger warning for reference to (primarily institutional) abuse from care agencies, social workers, and carers, Includes some specific examples of incidents with minimal detail. Reference to post traumatic stress response.

Chronic illness doesn’t run to a schedule. My body isn’t going to behave itself at 6,30pm just because you’ve decided that’s when I should have a wash. Similarly, few people will eat all of their meals at precisely the same time every Single day. Don’t get me started on toileting. Take a shit at precisely the same time every morning? Good for you, but do you want to take a bet that you’ll never need to go any other time? You can hold on for 12 hours overnight right? I mean if you can’t, you know there are options other than toilets right? Surely you could just shit yourself and clean it up in the morning?

Care cuts mean that I am the victim of continuous abuse. That’s what the cuts are – abuse, plain and simple. Don’t try to tell me otherwise. The government and councils are using their power to deny me my basic Human rights and dignity. This means that I am always on edge. I am always in ‘fight or flight’.

If you’re a care agency or a social worker, don’t expect me to trust you fully. It shouldn’t take much exposure to either to know the system is fucked. If you can’t see that then as far as im concerned I have very good reason to doubt your intentions – doubly so if you hold this against me. Maybe you are one of the good ones trying to do your best in a bad system – but then you should sympathise with how infuriating and upsetting it is to try to navigate.

Likewise for carers and PAs except that I’m aware you may not know just how messed up the system is. You could just be going about your job as best as you can. Here’s the important thing – I don’t know you. I don’t know whether you are a good person or have good motives or not, so don’t take it personally if I am weary. And if you expect kudos just for the basic fact of not abusing me? Just no. In fact, it’s usually abusive people who expect those gold stars because they believe they are good people. If you’ve just started working for me, remember that I don’t know you fully and am getting to know you and whether or not you are safe. You’re probably doing the same – but the difference is that without a doubt, you have the power in this situation. Sure, I might have some influence over your future employment (not something to be sniffed at) but I am putting your life in my hands. In the case of my current level of disability that means me letting you use keys to get in to my home before I’ve even met you, and meeting me here alone when I cannot move from this bed. Do you really think that just because you hold the title ‘carer’ that means I feel safe?

Carers and PAs work really hard and you deserve to be shown appreciation where it is due, but I also need to get on with my life. At the end of the day, this is a job you are being paid to do. I will show appreciation for your work, but I am not indebted to you. You are not doing me a favour, this is paid labour. Please don’t come in to this job thinking that you are doing good helping people, but feeling resentful if you are not given your own way all the time. I have had carers before tell the agency I’d told them “I don’t need to appreciate you, I pay you to do this” when in reality a carer had threatened to leave me with my basic needs unmet because she had decided I was complaining (I’d asked her to be more gentle) and in response the suggestion of being left without this assistance I had said “But this is part of your job, I pay you to do this.”

Expressing emotion and frustration is not abuse. It is possible for clients to abuse their carers and PAs and any accusation should always be taken seriously – but all too often disabled people are accused of abusing carers and PAs simply for being human beings and not being perfect charicature of a good,worthy disabled person. I’ve been accused of abuse before by carers who were abusing me. As someone who has been abused I took this accusation hard and agonised over it because I couldn’t bear the thought that I might have inflicted on others the same that had been inflicted on me.

You are here in a professional capacity, I am here as a vulnerable person trying to live their life.  As a carer you might be in ‘job mode’ and be able to keep that hat on when you are here knowing you can take it off as soon as you leave – but I am in life mode. I can’t keep a professional hat on 24 hours a day when I’m just trying to do basic things like go to the toilet.

Further to my last point, even disabled people with the most challenging behaviour need carers. Hell, even really horrible disabled people need carers. The system at the moment means that rather than carers being given the tools they need to cope with these situations, they find themselves in a position where their only option is to turn the job away. To be brutally honest, I have experienced a lot of carers who refuse to do anything other than the easiest of jobs (they have even worded it as such). There is nothing that obligates care agencies to keep providing care to clients, and if all carers are saying they won’t do the job because it is too hard, then care agencies often just give the disabled person notice meaning many get passed from agency to agency.

‘Complex’ is not a dirty word. Many illnesses are complex. Combine this with the complex post traumatic mental health issues that can happen from sustained abuse from the health and social care system, and people’s care needs are going to be more complex than a quick 5 minute toileting visit. Often, to social workers ‘complex’ traslates as ‘difficult’, and to care agencies it translates as ‘not cost affective’. I’ve had social workers act like I should just stop being difficult, and care agencies tell me that I was losing them too much money – or refuse to work with me unless I was considered ‘complex care’ which pays more money. Of course even if I did qualify as complex care, this is not going to get paid out if the social worker thinks I can just snap out of it.
I am so, so tired – and I don’t just mean because of my condition. Imagine if you had to explain everything you need in your life? Think about how much instruction I just had to give you (carer or PA) in order to get that cup of tea. Think about how long it took me to use the bedpan and how much manhandling was involved. Compare this to what you have to do to get a cup of tea and to go to the toilet. Don’t feel sorry for me, but have compassion. Understand that whilst you may be the one doing a job, I am also working really hard – and whilst you get a pay check, I am working for assistance I have a basic human right to.

If you’ve been used to PAs it can be pretty horrible going back to using a care agency. When I hire people myself I can check (to a degree) that they are competent and that we are compatible as human beings. I can do background checks and I can have a chat with people before they start the job. I would also usually give you training and either do a background check or at the minimum have you vouched for by a mutual friend. When I use a care agency the most I ever know in advance is a carer’s name. Sometimes I don’t even know that. I have to assume that the agency did background checks and that they have given adequate training and checked for competency level. I have no idea if we will get on brilliantly, or if they would have been my arch nemesis in any other given situation. I don’t even know if they will understand the basics of what I am saying. My current agency gets new carers to do quite a lot of shadowing – but even then, it is amazingly easy for a carer to stand and look like they are understanding what is going on when in truth it is going over their head entirely. I don’t usually know how it is going to pan out until they start their first shift without support.

Lastly, if something matters to me, respect it as valid – no matter how small it seems to you, (This one goes for friends and family too). As I was writing this I opened my snack for the night and found that I had been given cashew nuts, and not almonds as I had asked for. It’s not a massive deal, and I probably won’t even mention it to the carers, but it’s just one more thing to signify how little control I have over my life, you know? This will have been one of many, many mistakes like this today. It builds up, and it is so much harder when that lack of choice and control is due to human error – because you know that things would be different if someone had listened, or done their job correctly. So if I seem like I’m making a big deal of something small, maybe I’ve just reached my level of cope for the day – or maybe for some reason that signifies something much bigger for me.

2 year bedboundiversary

(Content warning – short reference to social care abuse)

Today is 2 years of being bedbound. I went to the GP to give a urine sample, came back, got in to bed and have been there since (unlessyou count being dragged in to the spare room to lie on that bed whilt the hospital bed was set up 2 weeks later, or the two times I fell on the floor before hte bed rail- but I don’t think that really counts). I’m utterly heartbroken that I am still here but trying so hard to be positive about how far I have come. Things that have changed:
– I can move more and turn over independently. I still have help during care tasks for energy management but if I need to turn over I almost always can straight away or at worst have to wait only a short while until I can
– Toileting makes me a lot less ill, in fact it usually just fits in to my routine. With the catheter I no longer have to spend hours in a soaked bed waiting for a carer (which was horrible), and I don’t have to wait in a lot of pain in retention either. (You can blame the wet beds largely on social services and their downright abusive cuts/refusal to prioritise me claiming I only needed the toilet 4 times a day)
– I am having a pain flare at the moment but over all it’s a lot better
– I can talk in more than a whisper and for much longer periods
– I can spend more time online.
– I can listen to music And watch things sometimes
– I can tolerate more light and am looking for ways to increase the light in my room further
– I can chat online
– I can use my hands to type, write short letters, and colour in.
– I can always feed myself
– I can eat. In the first few weeks the nausea made me lose weight quite quickly
– I no longer spend all day dry heaving
– My catheter no longer pseudo blocks due to bladder neck spasm
– I am no longer taken over by horrible spasms
– Loud sounds make me jump but they don’t make me feel like my heart is going to stop, beat out of my chest.
– I’m less touch and sound sensitive
– I can sit up half way with a back support for 40 minutes for lunch and at about 20 degrees for much of the time I’m not resting.
– I am no longer terrified about my situation, being left alone and emergencies such as a break in or fire. I think these are genuine things to fear but I am not constantly on edge and having bad dreams about it.
– In the first few weeks I had a horrible burning pain in all of my glands (including my chest) that would burn and feel like they were swelling until they rapidly feel like they had popped and then it would godown again. I haven’t had that in a long time.
– I have not experienced full paralysis in over a year.
– I have less episodes of tachycardia (although more recently)
– I can see people at all/with less payback.
– I have taken part in one music project, written a few poems, and started a blog

– Although managing my care is far from cost neutral, it has a much less  detrimental affect on my health than previously.


There are probably many more but writing this has made me feel a lot better and more positive. There might be ups and downs,but I am moving forward for sure.

2 new poems about illness

Fighting adrenaline

Dear body,
I do not know how to respond when you shout
I’m too worn down to respond in anger
It takes all I have not to cower and hide
But I am here and doing this with you
And whilst I may not give in to your long list of demands
I am trying to be that quiet voice that whispers:
“I am listening, I’m just scared”
Sincerely, you are not alone.

The second has no title yet.

Sometimes I hang one leg
out of my bed,
and feel the resistance
against my skin.
Foot planted on the ground,
leg pushing down lightly
– hardly a firm foundation
(but a foundation none the less).
My body remembers,
though it cannot yet engage fully.
Left overcome with loss,
I remain hopeful.
It remembers,
My body remembers.



I was also thinking that one day I might write a book about my life experiences and start each chapter with a poem.

More test results

Got my test results back from my private ecological medicine dr. As last time, I have a mixed reaction to this because the answers are never simple. I doubt they are for anyone but there never seems to be one result that stands out above all others and says “this is why you are as ill as you are”. Still, I do have a path forward which mostly involves antibiotics to try and improve my gut health. The other main thing picked up on is that my adrenal tests are screaming out that I am stressed, so I need to work on that and in turn sleep and anxiety so that my body has more chance to heal. There was also one result the dr has never seen before and couldn’t make sense of – so heres to being a mystery! There were also suggestions of other places to look for problems. My DHEA was sky high at one point inn the day. I wonder if it is to do with taking testosterone.

It can be pretty overwhelming having so many things to do but I am trying, and will continue to do so.