When I gained my newest endo, he was the first person to actually think about me as an entire person, not just a walking set of illnesses and symptoms that needed treating. He realised that me waiting around for tests and trying different treatments and being bounced from doctor to doctor in various hospitals was doing nothing for my mental health, self esteem and physical health, so he got me an appointment with the Occupational Therapy department at the same hospital.
I already have physio in the same department (albeit different Hospital) and I’ve been to occupational health when I was still working, but aside from knowing that OT helps with ‘every day’ stuff, I didn’t really know what to expect. But I was quite keen to go because I like to be proactive and if there was something I should be doing to help myself daily, I wanted to do it.
I’ve been going for about a year now, every 3 months. To start off with, I had to fill in a questionnaire about my levels of activities, health, mental health, and perception of my illness, which we revisit every now and then. The therapist was lovely and said that she usually only dealt with people who had a diagnosis of Chronic Fatigue Syndrome /ME but my doctor wanted me to see her because there’s a lot of overlap between ME and adrenal insufficiency in terms of symptoms. It wasn’t going to do me any harm trying it, basically.
I got a bit of a shock when she asked me what I wanted to have some kind of control over or ‘say’ in my life. What did I want to be able to do that I currently couldn’t? No one really asked me that the past few years, it’s been more a case of ‘dont do that’ and very little attention paid to my quality of life. So I said I wanted to work on building up my tolerance to walking, because I could only walk about 30 seconds before I felt like I was going to pass out and things start to get fuzzy.
Since then, I’ve not been overly successful on the increasing my tolerance to walking but it has increased, just not to the level we’d have hoped so far. But she’s also helped me with things like pacing, sleep and concentration. To be honest, she said I was doing an awful lot of the stuff she’d recommend anyway, and that I’m pretty much a model patient (gold star for me!), but it was actually really good from a mental health and self esteem point of view for someone to actually tell me this. I’ve been doing the best I can for my health and someone was actually acknowledging it! I actually needed that reassurance.
The last time I went to her, I’d been feeling pretty fed up because I felt like I was losing more independence rather than gaining it. I was down to washing twice a week and only when my husband helped me. I wasn’t really getting dressed because I had no energy. I was sleeping a lot and not really going anywhere and I kept ending up in Hospital. I told her that psychologically, if I could do a couple of basic things for myself then I might feel better, but my husband was having to work a lot, and because I rely on him for washing, eating, doing jobs in the house, going places, pushing the wheelchair (which we bought) … pretty much everything, I was getting pretty depressed. It was also getting dangerous because I wasn’t able to make myself food so hypos and low cortisol episodes were happening a lot.
Then she started asking me questions- if I had x would this help me? I was a bit confused and said ‘what, like equipment?’ And she said yes.
It never occurred to me that there might be things that could help me at home that the nhs could provide. I always assumed that it was for old people. She talked me through all the various options and we decided that a shower stool and a perching stool for the kitchen might help me get some independence back.
Now I can choose when I wash. Seems like a basic thing right? But mentally it’s so much more empowering being able to decide when to be clean, not relying on someone else. I’m still limited- I can’t do it every day, I have to have a nap beforehand and a snack and it has to fit in with my schedule around my illness but it’s still way more choice than before. And the perching stool for the kitchen means I don’t have to stand when I’m trying to prepare food. It makes it a bit safer, since standing and heat are guaranteed triggers for me. Again, I’m still limited- I only really make soup and put salad in a bowl but it’s still more of a choice than I had before. Choice over simple things, I’ve discovered, is a fundamental right, and I’m actually a bit cross at all the other HCPs I’ve come across who I’ve told these kind of difficulties to in the past and just ignored me- I was still alive, therefore who cares about how I feel about my independence?
It was actually a quick turn around as well. Within 2 weeks of the appointment, the stuff had been delivered. I don’t know if it’s because I’m a young person so I got overlooked in the first place but it’s definitely worth finding out if there are things that the nhs can provide you with to help if you’re in the same situation as me. I was never told anything so I didn’t think I was eligible. But it’s made a lot of difference!