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.  

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. 

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

Missing in action 

​I’ve wanted to blog for a long while but just not felt able to.  I have been dealing with many a crisis relating to my PA assistance (formerly agency care),  issues with social services,  and several legal issues.  It’s not just that I’ve been too unwell to write,  though there is that – it’s that I literally can’t write about the things that have been happening,  because if it were traced back to me I could get in trouble.  I’m also super paranoid about writing about the big dilemmas I face –  even though I feel I need an outlet,  and also think they are experiences worth sharing.  
So first of all I should probably check where i left off.  *goes to look up my last blog post*.  It was a short health update and saying that I’d started live in care. Well,  I’m still doing live in assistance (I am trying to call it assistance and not ‘care’).  It has been a tough journey but I have a few live in personal assistants and will also have some part time lens that come and do double up.  I hope so badly that things will work out with this new intake, as I have had difficulty previously that PAs didn’t fit my personality,  or they would only stay very temporarily.  I still need to recruit for one more part time PA,  or to use an agency,  though I am nervous about going back to having two people here at a time.  It can be exhausting.  
Talking of exhausting –  I’m not well, really not well.  I’m far more ill than I care to admit and on top of that I am struggling to sleep.  This has stemmed from the fact that I have so much to do.  First recruitment,  then training and legal issues.  It’s never ending.  It’s a job –  and I’m not well enough to work…. Yet somehow i find the adrenaline to push through, because what else is there?  I have gotten help thank goodness but have still had a lot to do by myself.  The biggest problem is that as I overdo it,  my body gets stuck in a cycle of fight or flight and I can’t rest or sleep. 

I’ve decided that I’d like to write more openly about being queer and transgender on this blog, though I’m not sure where to start.  I do know that I need to share somewhere that my gp is suggesting stopping my hormones on the basis I cannot get to hospital for a pelvic ultrasound.  I am hoping the gender identity clinic (GIC) will tell him that this is a bad idea,  and let him know these scans are a suggestion (all be it based on medical research) and not a prerequisite of hormonal treatment.  I’m hoping that he will be told that abruptly stopping someone’s HRT that they’ve been on for 7 years is unethical and physically and psychologically unsafe.  I am hoping he will feel very silly when realises the scans have nothing to do with my liver (which he seems to believe). What I want to say to him is whether he would prefer me to stop being trans,  or stop being severely disabled /bedbound, because that’s the position he is putting me in.  He was dismissive of other issues raised,  jotted things down as if he was going to come back to them (but never did); and had no suggestions for my sleep problems other than that I should come off my privately prescribed sleeping tablets (which is a ridiculous suggestion). Everything is put down to me being in bed,  and whilst yes some things can be exacerbated by,  or caused by that, it would be really helpful to be assisted with medical management for my situation as it is now,  not just point out how my being in bed is the main issue.  Of course all of this was said in that kind doctor voice that makes you feel like you’re being listened to and supported right up until they leave and you’re left realising that you’re in a worse position than you were when you first started.  
I have a lot more I’d like to write but will leave it there for now as it’s nearing 5am and I’d like to get this blog post up before the clock strikes 5. My next blog will include some poetry I have written in the last few weeks. 

Again please do share my blog anonymously.  Thank you.  

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.