Friday 18 November 2016

Flare ups, Frustration, and Fear

The Dreaded Envelope

The dreaded white envelope came through the post a couple of days ago. An ESA50 that I need to fill in and send back within a month. I had a feeling I'd be reassessed soon, but was hoping they would at least wait until my birthday and Christmas were out of the way first. Wishful thinking I guess! When I saw what it was, I became so panicky and tearful. I've been through it all before, and have horrible memories of the Work Capability Assessment and the Work Programme.

This is such a bad time for me to be reassessed. I don't know how I'm going to cope with it to be honest. If you've been following my vlogs, then you'll know that I'm having to talk about some very difficult things in the past, in therapy. This means that I'm struggling as it is. The pressure of being scrutinized and judged for daring to be too ill to work, and the possibility that I could either have my disabilities completely dismissed & found "fit for work" or I will be put in the work related activity group and possibly forced onto the work programme (or something similar), is likely to push me over the edge. I'm going to need a lot of support from my therapist and GP.

I hate the way the ESA letters are worded. They're  covered in bold writing; telling you that you may be sanctioned/found fit for work if you don't do this or that. I struggle enough with letters like that, but I live with my parents, so they'd know if I was going into crisis. For a vulnerable person living on their own, the wording of those letters could have such a detrimental impact on their mental health. There is the focus on work being "good for your health" as well; implying that everyone should work, no matter how ill or disabled they are. So right from the start, you feel as if you will be found fit for work regardless.

I'm hoping I can get  evidence from my physio, therapist/mental health nurse, and GP; to back up my claim. I know in some areas, GPs won't do supporting letters for ESA claims however. I've not been in this area very long, so have only been registered with this GP for less than a year. I do hope I can get some sort of evidence though.

Flare ups

I've been in more pain, much more exhausted, and more dizzy than usual this past week or so. I think the damper weather must be making me feel worse. I'm due to start my period soon as well, and find that I flare up more easily around this time. I've found it particularly frustrating this time round however. I'm finally having a type of therapy that might actually help, and physiotherapy with a physio who has one of my conditions. I had to cancel both of those appointments this week. I was getting motion sickness, bad dizziness, overheating and getting exhausted after simple things (such as brushing my teeth). I don't want to end up cancelling too many appointments, or I will be discharged. I need that extra support!

All I can do, I guess, is pace myself, rest when I need to (i.e. before I'm completely exhausted), and look after myself better. I wish I could control my illnesses, but I've tried and the best I can do is manage and work round them. Willpower does not cure chronic illnesses.

Monday 7 November 2016

Bendy Life

Last year, I had an Orthopaedic Assessment for my subluxing left knee . It ended up as an assessment of most of my joints, and I was diagnosed with Hypermobility Syndrome. I was referred on for physiotherapy (mainly for my knee) to strengthen the muscles round the joints and hopefully lessen the chance of subluxations/dislocations. I started physio in the area I lived, but this stopped when I moved out of the area.

There were a lot of things to sort out during & after the move, and my worsening health meant that getting referred for physio near my new home was on the back-burner for a while. I finally got to a point where it felt like a good time to start physio again. I dreaded the idea of having to give my life story to a stranger again; with the worry that my physical difficulties would be underestimated (which felt like the case with my previous physio!)

I had my first physio session last Friday and was very pleased with it! The physio was lovely! She was so understanding, considerate, and she listened to me. It turns out that she has Hypermobility Syndrome too! She examined me and saw how I stood, walked etc. Because I have frequent dislocations, she told me that my Hypermobility Syndrome is severe. 

She asked me what I hoped to achieve from these sessions. I said that I would like to have less subluxations and a little more stability in my hips so I could walk a bit more. If I can physically go on a walk (no matter how short) then I have more chance of improving my agoraphobia. At the moment, I'm finding that my physical problems worsen some of my mental health ones.

When talking through (and getting me to try) exercises, she would listen to my concerns and notice if certain exercises were causing more strain/pain than they should. This was so different to the last physio; who implied I simply was reluctant to exercise...

As well as exercises, the physio suggested insole arch supports (as she noticed the arches in my feet are quite low) as well as kinesio tape so that my joints are less likely to pop out while I exercise.

I see her next in a couple of weeks, where I will be trying exercises while wearing kinesio tape. I've never used this before, so am interested to find out if it'll help.

Tuesday 1 November 2016

Session 2: Starting Interpersonal Therapy

At the moment, I'm vlogging about my experiences with Interpersonal Therapy. You'll find my Chronic Illness playlist here . Please share and subscribe if you like my videos! I'll be back to blogging very soon, and my next post will be about starting Physiotherapy for my Hypermobility Syndrome. See you soon!