I’ve been very much absent on this blog recently. At the end of March I started phasing back into work after a long period of absence. It’s going well but is taking all my energy and most of my mental capacity. My fatigue has worsened which inevitably has an impact on my mental health. I have to keep reminding myself that this is expected and normal under the circumstances, but it’s still been hard.
Alongside this I have been applying for the UK disability benefit called PIP, which has ironically been in the news lately as our prime minister thinks it’s too easy for people to qualify. Let me tell you there has been nothing easy about the application process so far. Even from the very start you have to ring to request an application form which isn’t helpful to anyone with phone anxiety. When I needed to request an extension it took me three or four attempts to make it through the complicated telephone system, which hung up on me multiple times, to then be on hold for 40 minutes for something that any other organisation would let you request online.
The form is long and complex and even as a well educated articulate person I knew I wouldn’t fill out the form in the right way. I am an expert at denying or minimising the impact disability has on my life and my conditions are both interrelated and at times seemingly contradictory. There was no way that on my own I could turn my health into something cohesive that made sense on paper. So instead I paid for an Occupational therapist to support me with the application. Her help was invaluable but has meant that in the space of a few weeks I have had a two and a half hour assessment with her and then a three hour session filling in the form together.
Now I have to wait several months for a call from someone in the DWP who may or may not have any knowledge of my conditions and will ask me similar questions over a two hour phone call. This will more than likely result in the DWP rejecting my claim and having to appeal the decision, where something like 70% of the decisions are overturned. I don’t know how anyone with any kind of chronic condition is supposed to get through all of that without it impacting on their health. I’m currently in a particularly bad post-application chronic fatigue flare leaving me mostly weak and shakey.
At the same time I have been continuing to come to terms with what I can and can’t change about my health and in turn the impact that has on the life I can live. It seems unlikely that my fatigue is going to improve much from how it is now since my thyroid issues are now “fixed”. There’s probably not going to be a turning point where I feel “better” and can do all the things I’ve been putting off. Similarly all the therapy in the world is unlikely to change the fact that my mental health is something I will have to carefully manage and monitor.
I am also in the stage of eating disorder recovery that I find the hardest. I don’t need to gain any more weight but my body seems pretty sceptical about that leaving me stuck playing Russian roulette with the scales. I have had months of being reassured that normal people eat this way, that snacks are fine and all fear foods should be challenged. But now that advice gets put to the test. It’s hard not to have your confidence knocked when things start being taken out of your meal plan or altered to stabilise your weight. For me this has always escalated my fear and anxiety around food and distrust of my body. It’s true that weight restoration is hard but going into the no man’s land of what weight maintenance and long-term recovery looks like is terrifying.
All this leaves me with a lot of emotions to manage and limited energy to manage them with. I have collected many unhealthy coping strategies over the years, restriction being just one of them, they are appealing because they are effective at dealing with difficult emotions. Admittedly they cause you multiple other problems and keep you stuck in the cycle of poor mental health but I still miss having them available. Instead I am trying to build more positive coping strategies into my life. One of these has always been sewing.
My Mum taught me to sew from an early age. As a sick child without the energy to run around and play, I really took to sewing and other crafts. Over the years I have made some truly terrible gifts which have been accepted graciously by the recipients. But little by little my skills have improved along with the quality of my work. There’s something soothing about sewing for me, particularly hand stitching, it can give my brain space to either switch off entirely or process the day. Making gifts for people both gives me joy and, whilst it’s not always an activity I can sustain for long, gives me purpose even in fatigue filled days.
All of us face the lifelong challenge of finding joy in whatever season we’re in. Difficult days can still have good moments and recognising and remembering those can help see us through darker times. If you don’t have a creative outlet to help you cope with and process life then maybe it’s time to find one. We can’t always change the circumstances that come our way but we can choose how we face them.
Hope Whispers 