Taking it out on carers

This blog is likely to contain a lot of shorter posts for a while, a lot of which will be about care agencies.

I had an altercation with a carer a little while ago where I snapped and said she took it out on me when she was in a bad mood. in response she said she didn't but I did and all the other carers agreed. at the time I was defensive but maybe they were right...in a way sort of. 

I apologised to a carer a little while ago for being snappy and explained it was because I was exhausted. They responded by saying it was ok but I should also be patient as they were trying to work it out. One carer was new and the other has worked  nights very recently. She should have known the basics but she didn't. she also wasn't listening and kept doing things that hurt me. I'd give instructions to do something differently at least 3 times before she moved her hands away. She had assumed the mentality of lead carer except her instructions to her colleague were vague like 'the cushions' - I own at least 10 cushions. When I said "I am utterly exhausted and can't explain everything right now. Please can you tell her which cushions". She responded with "the cushions" as if I had never spoken.  She clearly hadn't tried to memorise my nightly routine. 

Do I take my bad moods out on them? No.  When I'm completely exhausted, in agony and every word I utter has to be shouted to be loud enough because my lungs are weak. when every word I utter causes a surge in nausea and yet none are heard, understood or respected, do I ever let my frustration boil to the surface and snap as I give instructions I shouldn't need to be giving. Yes, absolutely.  Would it be better if I didn't? Probably yes, but there should be a far more obvious solution than me bottling it up.

old friends and carer troubles

I had an old friend come and stay with me recently.  We were very close before I moved away for uni but haven't caught up or spent that much time together for almost 6 years!  

Having someone from that era of my life here really brought home how much my life has changed in the last few years.  I pushed myself far too hard that week and yet didn't come close to doing as much as I would have done were it not for being chronically ill.  For example, I couldn't choose to cook us both dinner - I had to ask P to do it and there were several days where I had to leave P to go and explore whilst I stayed home in bed.  This was frustrating because some of the things they wanted to do, I would have enjoyed as well! 

I'm not really sure how to describe it but it really brought it home how much things have changed.  I know that there is much more I could be doing to manage my energy but I honestly just kept forgetting because this wasn't something I had to factor in to my life 5 years ago!

My attempts at recovering from the visit were disturbed by a sudden, urgent need to change my carer - something I was hopeful I would be able to put off since I will soon be employing PAs privately.  Whilst here, P commented about how cold my carer is but they also witnessed 2 incidents which just spelled out how ridiculous she is as an employee.  The first was her making a 45 minute long personal phone call on the balcony whilst the hoover was running on my sofa (to sound as if she was working).  This is obviously seriously taking the mick.  There was also another incident which was pretty disgusting, out of line and well....unbelievable.  So much so that I'm going to save posting about it here.  I am ok, safe etc.  It was not abusive towards me. 

After this drama we phoned the out of hours department and had her visit for the evening cancelled.  Unfortunately this resulted in issues with care for several days.  Thankfully 2 other friends came to hang out, help out if necessary and generally keep my mental health somewhat stable.  They've now gone and I'm hoping I'll be in the headspace to balance rest and working through my endless to do lists over the next week or so.

The carers I have at the moment are ok-ish.  Unfortunately they also take up far too much energy by not understanding most of what I'm saying and/or asking for constant clarification.  Speech and communicating are difficult when I am particularly unwell so this is not particularly useful!

I had intended for this post to be about several other potentially more interesting things too but am finally becoming sleepy so will attempt to write more another time.  

Dear carer....

Dear carer,
you've been working with me for 10 months now.  This is long enough to know little things like to change gloves between helping me go to the toilet and getting me a drink.  You should have known how to turn people before you even started working with me.  After over a hundred showers, you should know little things like to move things back so that I don't have to struggle to reorganise the bathroom everytime I need the toilet.

p.s please wash, paying particular attention to your feet (or at least leave your shoes on) and stop taking personal calls whilst here.

pp.s I know your fiance sits outside my flat waiting for you some evenings.  This is not ok.

Another complaint time?


On a more positive note, my care budget has been agreed for certain.  I will be making some calls tomorrow but I already have some interviews set up.  Hurrah!

things carers shouldn't do (but from experience have!)

- you should probably know what a sandwich is.

- it is surprisingly simple to avoid spraying someone's genitals at full force with a shower head.

- Being 4 hours late is not ok especially when the person you're working for hasn't eaten or been to the toilet.  They need you there for a reason.

- 'I'm going on a night out' is not a good enough reason to turn up over an hour early.

- Pads do not go in the recycling (and your kids nappies shouldn't either!)

- If at first you fuck it up aim not to fuck up again, or again or...

- Let the person you're working for know that you have heard them.

- Remember the tasks you're asked to complete.  If you forget, ask.  Don't just leave.

- Don't walk away unless you're sure you've finished being spoken to.

- You have keys for a reason. Remember them and don't stand outside banging on the door for 40 minutes if you forget.  It won't help.

- Think about portion size.  Is 1 and a half tins of baked beans really necessary for one person?

- Talk to the person you work for.  Ask them how they are. Seeing someone 3 times a day who only stares at you is pretty isolating.  This will also make your job easier.

- Don't shout or insult the person you work for.

- Don't laugh at the person you work for.  If you can't help it then at least explain why.

- Don't fall asleep on the job.

- Wear deodorant.

- If your feet keep getting wet, wear more suitable shoes or shoe covers - don't take your shoes off in the shower.

- How Mrs Jones likes her back washed is irrelevant.  If someone says you're hurting them, listen.

- Avoid terms like 'change you', 'dress you', 'shower you' etc.

- Your mortgage and family problems are your own business.  Your client is not a counsellor.

- Turn your mobile phone off.  If you have to take an important call then say so.  Don't just stand arguing on the phone in front of a client.

- Do not judge or guilt trip your client about their disability and how hard you perceive they are trying.

- If you break something, apologise - even if you don't think it was directly your fault.

The inaccessible nightmare that is visiting family

I meant to post this earlier but I got side tracked downloading apps on to my android phone.  I've been looking in to various different apps that might make it easier to use the computer when I'm not so well as well as apps that make accessing musicianship easier.  Definitely more on that at a later date!

Last week I visited my family in my home town for the first time in over 2 years.  It was a far more positive experience than I'd originally anticipated over all. It was good to see family and friends even if I did only stay for two nights.

Still, there are quite a few things that just made it clear to me just how much my impairments have progressed.  When I last visited I was only using 1 crutch.  My mobility was impaired but it was more about fatigue. I managed the day ok, I just paid for it later.  Now I use a powerchair pretty much full time.  I didn't realise when I first started using a basic electric wheelchair nearly 2 years ago that my impairments would get much worse, not better.  In all honesty, it's a bit sad really.

Trying to travel at all as a disabled person who relies on equipment and care is a bit of a nightmare.  I used to travel quite a bit and visit friends houses regularly.  It occurred to me whilst at my mothers house that in the last 18 months this was only the second time I'd been inside someone else's home. Now don't get me wrong, I do love my flat and enjoy having people over but I also miss just sitting with a cup of tea at someone elses, watching a flim, getting a takeaway and enjoying being in other people's company without being the host.

Looking at how inaccessible most people's places are, there's no wonder I don't just pop over for a cup of tea. Not only does it often take me twice as long to get across London as non powerchair users, getting in to the place when I get there is a nightmare.  In order for me to get in to my mum's house, I had to use a make shift ramp (bricks and wood) and drive at an angle more suited to a ski jump than an expensive piece of kit.

Then there's the age old crip problem.  Where the hell do I pee?  Well, to be honest, on this occasion in to a disposable gel urinal in a cupboard under the stairs.  Nothing beats shouting out "mum can you pass me my phone please?" "why?" "It's got a flashlight on it". See, I told you apps were useful :p Not everyone has a suitable cupboard and definitely not everyone would be happy for me to pee in it.  I couldn't visit my brothers at all as it's 2 flights of stairs just to get to the front door :(

I had to stay in a hotel too which posed it's own problems.  No profiling bed puts me at risk in an emergency as I cannot always move well enough to get out of bed independently.  (thankfully when the alarm went off at 5am, I was so startled that I spasmed/jerked upright :P )  This also meant I need to give my mum a key and rely on her hanging around any time I needed to lie down.

The biggest problems in hotel rooms generally is the bathroom.  Who on earth thinks a bath is accessible regardless of how many grab rails it has.  I used this as an excuse to have a bath with lush products though.  Although for future reference, getting in is easier than getting out!  I had my mum to help + there was a ledge behind my back which made it vaguely possible to get out.

The last and most frustrating problem was the fact that my care is not portable. In other words I can't access it from anywhere other than my flat.  If I didn't have support of friends and family there's no way I could have gone.  I can't afford to (and shouldn't have to) pay someone out of my own pocket.  Thankfully my mother is now more accepting of my impairments and was willing to help out.*  Still, she shouldn't have had to take 3 days off work for the duration of my stay and come in to the town centre 2-3 times a day.  I know I'm not a burden but I feel like one and it's just not fair when the support should be in place.

My plan to improve things for the future is:

- continue to fight for direct payments so that my care is portable
- continue to fight for higher DLA so that I can afford the additional costs associated with 2 travelling.
- Learn how to drive and get a wheelchair accessible vehicle
-taxicard (applied but where is it!?!)

Once those are sorted perhaps then I will have someone to help with these:
- portable ramp
- supportive manual wheelchair
- bath board/over bath shower chair
- suction grab rails (have but couldn't carry)

I really would like to visit people more often.  Being in someone's home is so much less draining than loud restaurants and pubs not to mention cheaper.



*big thanks to travelodge and their massive towels for helping me preserve my modesty ;)

Disability, gender, body image and generally hating everything

I've been meaning to write on the topic of disability and body image for quite some time.  Of course, the intention was to write something eloquent that people would relate to - with a hint of academia to boot. Alas, no.


I generally think I'm quite good at dealing with this crip shit, but not today.  Today it just really bloody hurts.


*trigger warning for transphobia and bad hospital experiences*


Also, this is a bit long I'm afraid but it's important for me to voice this.


You see, I've been filling in my DLA and ESA renewal forms.  For those who don't know, DLA forms request an intrusive amount of information about things like how often you go to the toilet, how long it takes and what help you need.  All fun stuff.

The thing is, I spend most of my time living - not counting the amount of times I shit.  I also try and ignore a lot of the times I probably need assistance and try and pretend it's normal to put up with certain things. The thing is; it's not normal.  DLA forms serve as a reminder that your care needs are not only higher than you originally thought, but that the chances of you getting those care needs met by social services or the NHS are slim to none.  


That's right! You're a smelly cripple but we're not going to help with that - here's £20 a week compensation. p.s we ignored most of your needs anyway.


It's also pretty bloody impossible to fill in those forms and not feel like some degree of a fraud.  After all, the daily mail says so!  Last year I made myself very sick repeatedly attempting to walk short distances and timing it. The thinking went the lines of "Bugger! Today I managed to walk 5 metres in 2 minutes but I put 2 metres on the form!  Will I get done for fraud?  Am I taking money away from others?  Am I just fat and useless?"  I wish I was joking.

Today I had a doctors appointment in the same department of the same hospital on the anniversary of my month long stay in hospital last year.  That stay was traumatic.  I was accused of making things up, ignored by nurses leading to several completely avoidable embarrassing wet beds, told that one single test could decide whether I was telling the truth about my care needs and general treated like some crazy person who was making things up (because you know, mental health issues are something to ignore anyway.)  That hospitalisation has left my medical records scarred and my body image in shreds.  


In that hospital they taught me that I was worthless, that my care needs were worth nothing because I lacked the back up.  On hearing my gender history my validity on a male ward was loudly questioned, calling the gender clinic psychiatrist became more of a concern than the fact I couldn't move or empty my bladder (13 hours in total without a non silicone catheter). I was assigned an endocrinologist (on the assumption gender is more relevant than impairment) and left writhing in pain when the urinary retention inevitably lead to infection, agonising abdominal pain and vomiting. After finally responding to my buzzer the nurse simply replaced the kidney dish without asking why I was vomiting.  I had to buzz again to explain that this was not normal.  Throughout the night I was told that the doctor was dealing with 'far more sick people' despite the fact if I was at home I would have called an ambulance by now.  When I finally did see the doctor I was told I didn't need to catheterise, apparently just pushing on my bladder would do the trick!...because you know not pissing for 13 hours is normal let alone when you're partially incontinent....kinda weird for it not to find it's way out.

It's one year since I left hospital and I'm still feeling the affects. I have care but no care package which means no guarantee the care will last till tomorrow and no choice over whose hands wash me each day.  Social services have no understanding of the need for a 'safe' carer when you're trans, autistic, have PTSD or have other body issues.

Arriving at the hospital today was enough to set my heart racing.  Thankfully a quick stroke of the hand from an understanding friend and the reassurance that swearing at the nurses who mistreated me would be back up by them saw me through.

Then to urology.  I'm fairly open about this stuff with my close friends and perfectly able to be lighthearted about it but there's still that voice at the back of my mind saying "you're not good enough. You're not adult. you're disgusting."

Then there's the nerves about potentially disclosing and the inevitable:
"so when were you diagnosed with MS"
"urm, I don't have MS, I have a diagnosis of 'possible CFS'"
"So why do you use the wheelchair?"
*facepalm*
....it's like the diagnosis means everything.  My experience of living without a diagnosis is one of being judged at every angle. Someone with MS can have exactly the same impairments as me.  The only difference is an MRI scan.

Yet again I find myself emphasising the seriousness of the issue in order to get any on going monitoring, being careful to say "oh yes, thank you, that's really reassuring" when really I'm thinking "what the hell is wrong then?" and being careful not to mention specific issues that sound too damn weird to be believable.  One day, I hope that even if my healthcare is not straight forward I can at least see the paranoia lifted and feel able to be honest.

Whilst feeling pretty damn awful about my body image already given that I feel infantalised, deligitamised and like a fraud I headed in to sainsburys.  One comment was enough to knock me to rock bottom.
"yes madam?"
This has happened a lot since I started using a wheelchair.  People don't look at me.  As soon as they've looked they apologise and change to 'sir'.  I feel bad. This shouldn't bother me.  I happen to think gender is a massive undefinable blob but I also have to live in that blob. I know if I wasn't trans I'd probably shrug it off as me being a bit effeminate and him being a bit lazy....but I can't.

Those words just reminded me of everything atypical about my body and made me feel like I'm not good enough.

I wish I could say 'enough, no more.' but I can't because it's all so ingrained...and I'm not the only one.   None of this stuff is anything to feel ashamed of but it's really hard to feel empowered about having a body that's different when you're constantly met with resistance and disgust. 

Independence

'Independent' is not a word many people would likely use for me these days, least of all doctors or social workers.

I have been repeatedly accused of becoming dependent on carers and this is (supposedly) the reason why I've been denied a personal budget or even an official support plan.  As if denying me any support would be a route to 'independence' (rather than a route to hospitalisation).  I've been made to feel lazy, a fraud, a scrounger and unworthy of 'their' money.  This has now been going on for 16 months.  This has left some deep scars to my self esteem and over all mental health and continues to grind me down - though thankfully I now posses more tools for dealing with this.

I've been so overwhelmed by all of this - by their accusations, their lies and abuse, that I've not really taken an objective look at just what I have achieved.

I have been fighting for 16 months to live independently, control my own care/assistance.  I've been fighting for the right to take part in hobbies and  volunteering with a view to further study.  I've fought for a wheelchair. I spent a month in hospital fighting for my right to care on discharge despite the lies being spread about me by staff whilst there.  That month was hell - but I still fought and left with care provision.

I live by myself.  After being of no fixed address for 4 months I moved in to my own adapted property. I kept pushing and pushing until this was confirmed.  Despite increasing impairment I refused to move in with parents 'until I'm better' because I knew realistically that time may never come and I would be stuck there with no financial means to move.

I am fighting for the correct level of benefits too, and fighting for a diagnosis.

Looking at this objectively, there's no wonder I'm exhausted by it all and no wonder that my mental health has taken a beating.  Many of these issues remain unsolved but one thing remains true:

I am sat in my own flat and whilst things may not be perfect, whilst the last 16 months have been hell, I have far more than 16 months ahead of myself to enjoy and I will keep fighting until I win the right to live the life I deserve to lead.  This is something I should probably give myself credit for.

I think I'm far more independent than they will ever understand.

Guilt, grief and self doubt

Guilt has been somewhat of a constant companion throughout this illness.  From the niggling doubts at the back of my mind whenever I rest, to the all encompassing sense of shame and failure after meetings or appointments with social services or doctors.  It's always there - doubts about whether I'm doing enough to stay well and independent; guilt that I'm taking resources away from others.

For me, this seems to have been tied in quite strongly with grief.  Feeling ashamed and guilty about everything is a convenient way of ensuring I never accept the true reality of my impairments and illness.  But it's also about control - the control of others, namely social services, the NHS and the DWP.  They act as though if only they could grind me down enough, I would stop fighting for my rights.

Sadly, it's been working.  The main reason I've not written in this blog in so long is because I've felt as though nothing would be good enough, political enough, eloquent enough - because I've just not been well enough to write as well as I used to.  I guess I thought people would judge me - but this is a blog, not a holy book.  People do not need to hang on to my every word.

I had a realisation the other day as I was heading through a shopping centre in my powerchair.  There is no chance on Earth I would be able to walk even 1% of the distance I had in the short space of time I was there and yet others were strolling around casually.  I then thought back to my own guilt when I was given an NHS powerchair.  I felt guilty because I can walk 2 metres... occasionally.  If I'm feeling guilty enough I might even walk 5!  Looking back, this just seems ridiculous!  You can't survive without a wheelchair whilst only being able to walk 2 metres occasionally!  My flat is much bigger than even my forced sickness inducing 5 metres!

The system is broken.  It's scarred my thinking and hindered both my independence and my acceptance of  impairment, but I'm working on it.

I will try not to feel guilty about not working.

I will try not to feel guilty about using a powerchair.

I will try not to feel guilty about needing care.

I still have something to offer in this world and no amount of prejudice will stop me from doing so.

"hope" - is it always a good thing?

I realise I've not posted in a while.   I haven't had the spoons for writing anything that I would consider worthy of posting. However, it's 2.30am and my head is spinning with thoughts surrounding my future, triggered by recent issues regarding social care meaning that I am still without daily assistance.

Most of the people I know on chronic illness forums seem to base their own future hope and aspirations around being well.  Amongst the majority of posters there is a fear of a future where they remain as ill or impaired as they are currently, or become worse.  I beg to differ.

It's not that I do not want to be well because I do.  I wish I could lose the odd physical sensations that interrupt my trail of thought and I definitely wish my cognition wasn't so restricted by fatigue and general messed up neurology.  But, I can envisage a decent future for myself where I am still ill and impaired.  I think this is important.  I'm not going to waste the years and months away fixating on a falsely positive sense of "hope" to the detriment of any level of acceptance or adjustment.

So what are my fears for the future?

I'm scared that rather than my body and mind letting me down, it will be social services, the NHS and the government that does so.  


I'm more scared of these services causing my impairments to progress than I am of the progression itself; because whilst I can accept nature taking its course, injustice is always hard to accept.

I'm worried that I will always be hyperaware of my impairments because "if I had adequate support I could have done that"

I'm worried that I will never be a performing musician or work again, not because my health prohibits it but because I have been denied the support necessary to complete daily tasks.

I'm worried about what all the above is/will do my self image and that by the time I'm awarded adequate support, my mental health problems will prevent me from doing the things I want to any way.

Hope is useful to keep yourself positive, but not to the detriment of fighting for your future.

  

Working out how much help you need

In learning to take care of myself I've discovered that just because a task is not completely impossible for me to complete, that doesn't mean that it's something I 'can' do.  This is something I'm still struggling with.  I've tried analysing tasks to see if they fit in to boxes of "can't": things I literally cannot do and; "bad idea": things that would involve a lot of payback. 

Completely useless!

Tasks placed in the "can't" folder just get moved to the "do it in a different way" folder and equally, things in the "bad idea" folder get moved straight over to the "definitely worth it" folder.  The result is that I get no rest and become more unwell.

To illustrate this:

 I experience transient paralysis in my legs.  Walking and standing are a "can't".  The sensible thing to do here would be to rest.  Instead I "do differently" and start transferring using my arms.  The result - I soon start experiencing the paralysis in my arms too or, as has happened before, I pull a muscle and can't use my arms anymore anyway.

Or,

I really want to do something outside of the house but my heart is going crazy.  This is a bad "idea",  I should be resting.  I start to bargain with myself: "if I go outside then this will increase my mental wellbeing and that will be "worth it", regardless of the set back".  The result - My health worsens and I become so foggy that my mental health turns to jelly anyway.

I know that most of what fits in "bad idea" should really be a "can't", that "can't doesn't always have to mean literally impossible.  If you'd decided not to meet up with a friend for coffee you'd probably say "Sorry I can't" regardless of the reason behind it.  So why, when it's something relating to my own health can I not bring myself to use that word?

I guess I know that actually this would result in me doing a lot less than I currently am and since I don't know my prognosis, it might not even stop the progression anyway.  I worry I would regret not having done as much as I possibly could before my illness progressed too far.

This block has presented me with a whole bunch of barriers in accessing social care.  Social services have now accepted I have a need and have placed me on their (now compulsory) 'reablement' programme.  This means that every day whatever I need help with is recorded in a folder along with the length of time it takes and a numerical rating of the amount of assistance I need.  I also know that there has been talk about me in the office and that there is a general assumption from social services that I will not need support after this point. This period of time has become about proving to social services that I do need support.

So, why then am I only accepting the minimum amount of assistance?  

I'm scared.  I'm getting ridiculously anxious at the thought of accepting help with personal care.  I'm happy for someone to help with shoes, socks, trousers and putting a coat on but due to various body issues I don't feel able to ask for help with anything involving any degree of nakedness.  The result is that I am struggling to get dressed in the shower room quicker than I did before care, or I'm just not showering, telling carers I'm feeling "too ill" to do so.  A large part of this is because of the anxiety this whole process has caused but also because whilst I can keep putting personal care in to the "bad idea" folder I don't have to ask for help and best still don't have to have the anxiety provoking conversation about how my body differs to that of other men.  

If I could employ someone myself (as I initially asked to do) then I would try.   I really would.  It would be like our little secret that I was asking for more help than I want to need.  Instead I get carers with poor communication skills, a book recording my "failures" and an office that talks about how I'm just lazy and refuses to deal with issues with carers.

Somehow, I can't see my anxieties reducing any time soon.