Thursday, 23 February 2017

Update 23/2/17 - ISTDP/mental health, my flat and physio etc

Just an update..

Physically, I'm doing fairly well. My hand coordination is mostly a lot better (unless I'm startled or post-seizure). I'm walking quite a bit now- I'm using 2 crutches and can only do very short distances, but the amount I can do is actually quite functional and useful now. I'm still supervised when walking but I don't need someone glued to my side anymore. I still use my wheelchairs quite a lot, but I'm often using my crutches as much in the house now. I've even had a few occasions where I've left the house completely without my wheelchair (only out to the car on the drive and then in from the car a very short way, but for me that's massive!). It shows a physical step forward, but also means I get some mental space away from the constant presence of my wheelchair too. Yes, my wheelchair is enabling, but to an extent it's also symbolic of a phase of my life that has been pretty horrific, so some space sometimes is very nice..

Life-wise, I got the keys to my own flat 10 days ago, and am absolutely delighted with it. It's stunning and I'm so very lucky to have it. Still lots to sort out before I can move in in terms of disability-related stuff, but we're definitely getting closer. I'm loving getting it all as I want it and having that control, but it is a bit stressful too, particularly all the paperwork etc.

Mentally, it's complicated.. I recently started Intensive Short-Term Dynamic Psychotherapy (ISTDP). It's beyond intense. I've spent 10 hours over the last 2 and a bit weeks working with a psychologist really trying to experience and process emotions of difficult past events. It's incredibly, incredibly hard going, to the extent that I was really reluctant to go to my most recent appointment (and had a bit of a meltdown at the start of the appointment as a result). I have quite a lot of seizures and body flashbacks during sessions, as well as my movement disorder flaring, and some panic attacks, all of which is physically and mentally draining, and it's been incredibly hard to break through my current dissociative state. My brave smiley mask has become so ingrained, so many people have given me well-intentioned but ultimately damaging advice to just keep pushing through (physically and mentally), and past events have challenged and messed me up so much, that I don't properly feel emotions to the extent I should. Trying to connect emotionally to past traumatic experiences (to properly process them) stresses my body psychologically and physiologically. My body and mind freak out, particularly because my anxiety levels are a really significant problem. For now, the psychotherapy is kind of unsettling me and I haven't yet seen an improvement, but I'm hopeful the ISTDP will help with a bit more time, as it seems to be doing something, and to be honest, I desperately need it to.

I'm still struggling with my depression to an extent. Despite having things to be really delighted about just now, I still feel pretty deflated a significant proportion of the time, and at times my depression is actually still pretty severe. I feel like I sound very ungrateful saying that when I've just got my flat etc, and I sort of hate myself for being so low when I'm lucky in some ways and 'should' be happy at the moment, but I know it's not my fault that I have depression, and I'm very aware (through therapy) that I need to be kinder to myself. Depression notices all the really difficult things in my life but pays little attention to positive life events, so the good things in my life right now haven't cured my mental health problems- that just doesn't happen (shock revelation there for some people).

I've been continuing to have physiotherapy and occupational therapy. I made (microwaved) poached eggs on toast with them one session, and climbed a flight of stairs another (and then failed on the way down and had a seizure on the stairs- oops 🙈). Climbing all the way upstairs was an immense achievement, as I really haven't been taking steps up at all for very long in the scale of things, so I can't wait to try it again next session.

I do tend to overdo things in physio/OT sessions and cause all sorts of symptoms in the hours/days that follow if I'm honest, but it's so tempting to 'make the most' of my time with them. I do try to reign myself in, but it's something I struggle with. I'm aware though, and know that being mindful of my limits is important.

At the moment I'm having care visits 4x/day to check on me and supervise things and that's going well. I'll have mostly new care workers when I move into my flat, but will hopefully be able to keep some familiar faces too, particularly for some of the longer visits (that'll be added when I move) where I'll be taken out and about, as I need to feel really confident with whoever takes those visits on.

A lot of my care needs are as a result of my seizures. At the moment they're happening every day or two on average, with multiple on some days. They're tough-going. A majority are without convulsions (I look like I'm in a deep sleep or have fainted, even though I'm completely aware just paralysed), but they're still exhausting. The fear of them is tough too, as they can happen with no warning at all.

My pain in general is variable, but my back pain in particular can be difficult.. I've finally had the courage to see a doctor specifically about it though (my back pain was caused during an assault 11 months ago that I find difficult to discuss, and I knew that would be the first question). I'm now going to have specialist physiotherapy to try to help my back, and I'll get referred for more investigations if it doesn't.

I had a lengthy appointment with a seizure (and sleep) specialist a few weeks back and we discussed through about a number of things. Narcolepsy/cataplexy and sleep paralysis was something we discussed in quite a lot of depth and managed to rule out for various reasons. We're also pretty sure there's no epilepsy, although I've been offered a 24 hour home EEG (that I'm doubtful I'll go ahead with) or a 5 day inpatient videotelemetry (that I ruled out straight away as it'd be traumatic for me and I don't think there's enough evidence it'd be useful to justify it in the circumstances); those would be to definitively rule out both epilepsy and a sleep disorder.

I also discussed various medications, but made no definite decisions and am still thinking. I'll probably wait until I see another specialist so that I can discuss with her and get her opinion on any likely implications/benefits.

Overall, I feel like I'm doing ok, and getting by, but it's a struggle at the moment, I have a lot of symptoms, seizures are pretty unrelenting and concerning, and I'm certainly not thriving, but I'm doing my best and getting through each day. I fear a massive relapse of any of my conditions, and I don't know that I'd be strong enough to fight my way back up, but I'm doing what I can. Some days it's all too much, other days I feel like it's all manageable, so it's very much a case of just taking things as they come, but *shrugs*, I'll just have to see how things go.


  1. Your explanation of depression has helped me understand it a little better, so thank you. I really hope your fear of relapse will be unfounded. It sounds like there's such a lot going on for you just now. Sending 'well' wishes. Anna x

    1. Thank you so much Anna! I really appreciate your kind comment ☺️ Hope you're doing as well as possible.. take care x

  2. Sending hugs 🐥🐥🐥

    (On a very random sidenote, if your [now very funky] crutches had a 'Coopers' label on them - that was my family! My great great [great?] grandfather started Coopers Walking Sticks!!! Nothing to do with my family anymore, but the name is still used on somethings...!)

    1. Thanks so much James! ☺️ Oo they are indeed Coopers crutches! That's pretty cool 😊

  3. Jess sounds like you are doing well despite what is going on for you, I have EDS which affects pretty much my whole body and my latest issue is my gastrointestinal system causing me to lose weight, pain and nausea when I eat so may be going into hospital for a peg feed. My mobility is very poor and pretty much housebound. Best wishes to you.

    1. Thank you! Really appreciate your comment ☺️ I'm so sorry to hear about your struggles.. A few years back I couldn't eat, they suspected I had gastroparesis, and I was very very nearly tube fed (NJ looked most likely). I luckily slowly struggled less and avoided it, but I remember how difficult it was, so can empathise.. sending lots of gentle hugs your way 💕