6 June 2019: Email to Occupational Therapist — Re: Shower & QoL Without One…

Hi Sophie,

I was wondering if there were any further updates regarding the shower room situation?

Right now, I am struggling and suffering greatly, unfortunately to the point I have now had to start regularly increasing my Morphine to counter the pain that the Shower would, should, be controlling and diminishing (and I know it does, because of my times at the Premier Inn).

Even then, the Morphine still doesn’t entirely control the pain – it just makes it almost bearable enough to survive with. On top of that, I hate it and resent it, since I never had any intention of requiring it in the first place, let alone raising the dosage. I am not capable of having other medications generally given to people with Fibromyalgia, due to severe reactions to them – therefore, the Shower is the only thing that can contribute to my pain relief. Morphine should not be the answer.

This is what life is currently like, simply because I do not have access to a suitable shower: The hot and pounding water, the steam, the heat in the room, the spray, all make a life-changing, and life-saving difference to me. When I am in a hotel and using a proper wet room there, with hot water and hard spray, my life is completely different.

However, here, without it… It’s an entirely difference matter altogether.

Right now, I am in constant pain levelling a 10 on the Pain Scale. It’s a 9 on a “Good” Day (And “Good Days” should not be levelled a 9!). I can barely get out of bed – and even then, it’s just to sit on the floor, right next to it. If I do sleep, it’s just cat naps for a couple of hours, which also involve pain-induced nightmares.

I am generally unable to even manage to get to the bathroom if I need it – I need help with this, and have to drag myself there (the pain does not allow me to “crawl”). By the time I get back, I am passing out with agony, I can barely breathe and afterwards I cannot move.

I just did this a few days ago. It’s the third day today and I still can hardly move, due to a mix of severe agony and muscles that have spasmed or stiffened to rock. I have no idea how long this will take to pass. During this time, I will be trapped in one space, reduced to doing virtually nothing, for however many days or weeks it takes to ease up by itself.

Physically, I am imprisoned in my room. I am unable to go downstairs, unable to go out shopping for groceries (or anything else), or partake in days out, or walking my dogs. I am house-bound, Room-Bound, unable to move, or do much of anything. I can’t even watch TV because I am too hypersensitive to colour, flashing lights and noise, due to my extremely overwhelmed ASD. I am subsequently reduced to blankly staring at apps and internet surfing all day, every day.

Even in my room, I am unable to do most things – the pain not only cripples my body, but also my mind. If anyone has had a full 10 pain – where they either want to, or are, screaming in agony – then clearly, you are unable to think and focus, too. Add that to ASD that  has been flared up to the extremes with hypersensitive TMI, and, frankly, it becomes unbearable – and will often lead to Meltdown situations.

Therefore, I cannot do anything I enjoy whilst in my room – such as reading, researching tech, using my computer for writing or blogging or creating databases, Gaming, watching movies or new TV shows, to name a few.

I’ve had to cancel several meetings with friends, including cinema trips to see movies I was verylooking forward to going to (I paid for a disability cinema card, and in the year I’ve had it, I do not think I have used it even once!). Plans I’ve had with Sara, my parents, all gone due to this, because I cannot move or tolerate this much pain. Nobody should be asked to tolerate this much pain.

Frankly, I cannot even communicate with friends via messaging, and actually struggle to hold any conversation with my own family – whether via verbal conversation or over messages. My Memory is severely impaired from the pain (my Mind can process nothing other than the pain, and quite frankly, does its best to make sure the Trauma of the pain is entirely forgotten) and I forget everything they say, or do, almost the moment after it’s done.

S has to help me with every verbal conversation that happens, and everything must be written down so I may remind myself over again what is going on or what has been discussed. It’s horrible, pathetic, humiliating (as an Asperger person, I am used to remembering pretty much everything), debilitating, exhausting.

I cannot tidy my room, nor maintain its cleanliness and organisation. This greatly affects my ASD temperament, not to mention the physical and hygiene issues this causes. I also cannot be in the same room whilst it is being vacuumed (due to my hypersensitivity with ASD), and since I cannot move or leave, it cannot be vacuumed.

It took a lot of effort and pain and severe headaches and time to manage to even simply create this email. It has literally taken hours to write.

Even breathing is excruciatingly painful and difficult. Frankly, I wish I didn’t have to do it.

This is all also notwithstanding my general Hygiene and Daily Living Activities:

  • I cannot wash properly or bathe (being wet-wiped by your mother doesn’t count, and it can be weeks or months between being able to get to a hotel).
  • I cannot wash my hair (using Batiste all the time doesn’t count, and it breaks your hair).
  • I cannot ensure the total cleanliness or hygiene of my catheter. Frankly lucky I haven’t had another severe UTI.
  • I cannot change my pad regularly (I cannot even allow another to do it for me, due to the pain levels it causes, and when it is changed, it always has to be by someone else).
  • I cannot clean my teeth properly (I use the Traditional Islamic method of the Miswak – however, I am still unable to do this every day due to the pain of anything touching me in my mouth, the ability to hold it, the ability to move it, the pain levels of using my hand to move it).
  • I cannot get dressed or undressed – Because of the enormous levels of Pain, Fatigue, and Drained, I can’t even think of doing this, and even wear dresses as nightwear, so I can just put a cardigan, legwarmers and boots on to go out, if I have to.
  • I sit on the floor all day every day, and unable to check for pressure sores – and it hurts my back

Amongst other things.

This situation is strongly affecting my ASD, Anxiety, Depression. I am far more prone to Meltdowns and Panic Attacks (both of which are more frequent). My TMI (Too Much [Sensory] Input) scale is off the charts – meaning, I cannot tolerate anything.

When my ASD has been tipped into “Flareup” mode, I cannot settle, cannot be calm, become severely depressed and agitated, am unable to govern my Meltdowns at all, and the smallest, slightest thing can and will set them off. This is not an appropriate way to live – and it very strongly affects my family personally, family dynamics, and their own abilities to cope with me.

I feel despair, miserable, pathetic, dirty, humiliated, resentful, and so much pain. My once long and shiny hair is tattered straw (and that is/was one of the most important things in my life). This makes me miserable and very depressed. My hair used to be one of my most precious things and something I was most proud of. A Key Part of my Identity. Now, it’s in ruined tatters, and it breaks my heart, and my head.

I have to get my mother, my father, my friend, to do even the basic things for me. Changing my pads, washing me down, bathing me with wet-wipes, grocery shopping, other shopping, taking out my dogs, getting food and hot drinks, cleaning me up after “accidents” or if my catheter comes out (again), massages, basic physio, brushing my hair… A lot of these things that I could do, and cando, after I’ve been using showers for a few days.

Frankly, I do honestly have to talk myself out of suicidal ideations several times a day. I have Zero Quality of Life like this.

All this pain, suffering, imprisonment, due to the lack of appropriate shower here in my own home.

The heat dissipates and melts away so much of that agony. It Prevents pain and suffering the next day after doing something physical, like going out. It means I do not have to write off days, even weeks, of my life because I wanted to do something – like my own grocery shopping. 

It means I am able to Game, Read Magazines and keep up with PC Tech, go outside or even just downstairs, go shopping and choose my own food, go and see friends and movies, just go and get some coffee and sit in Starbucks/Costa for a bit. Basically, everything everyone takes for granted. It’s the small things that matter, that you miss, when they get taken away from you. I also have a wheelchair that cost the ALAC services a lot of money that isn’t getting used much at all.

I know this to true, that the Showers have that much of an effect, because in the Premier Inns / Travelodges I get to have daily showers, and I do use them constantly. I absolutely have one every time I come back from being outside.

As you can see, it is more than imperative to have this shower installed As Soon As Possible. This situation is unbearable, and so far it was been going on for almost a Year and a Half. I can no longer afford to continue to pay for hotel rooms to simply use their shower. I can no longer endure waiting weeks and months between showers, to wash my body and my hair properly. And with (possibly) hot weather coming up for Summer, managing without a shower for one more Summer, seems too much to go through. Again.

As well as to point out all this, I also wish to enquire after being able to have the specific chair I wanted?

And if, for some reason Care & Repair wouldn’t pay for it, could I purchase it and have them install it for me, instead?

Thank you for your time and patience. I hope to hear from you soon.

Kind regards,

~ ~ ~ ~ ~ ~ ~ 

Delphine Khouri

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~