HAD ENOUGH Last week I wrote about my covid-19 nightmare, today I’m writing about how pointless my life feels. I became disabled after having my last child 13 years ago. For the first 6 years (approx) I really was at a loss. My life and the lives of my family all changed . We went from a pretty basic but active life to isolated chaos. .We went from going to children’s groups, camping, walking to being stuck at home. I couldn’t function as I could and permanently felt like a failure. My lowest points were having to sleep in a recliner downstairs and wee in a camping toilet in my hallway as I couldn’t access upstairs. Luckily my house is more suitable for my needs now.It took awhile to get a diagnosis which was difficult to accept as my body clearly wasn’t working but it took awhile to work out the reasons for this.After 6 years of feeling sorry for myself and being like a zombie from all the drugs I was eating I decided to try and take back control of my life . I succeeded to a point . That didn’t mean my illness disappeared, I just learnt to cope better with it. One of the first things I did was look at my medication. I was on 60mg of morphine twice a day. This didn’t stop the pain in my body it just stopped my brain from recognising it but as I said I was like a zombie. I decided that I needed to be more present so with the help of my pain doctor I changed medication to a more suitable one for me Sativex spray. I really benefit from using it . It’s not a cure but it helps so much. The next thing I started doing was going to the gym. Luckily during my pre illness days I met a gym instructor at my spinning group who went on to manage a council run gym and he agreed to help me. It was so difficult but also rewarding. To start with I couldn’t manage 5 minutes even on a handbike . I have to use a non invasive ventilator when exercising and also I struggled with hyper sensitivity to lights ,displays, noise. I had one goal in mind to be able to create some kind of life with my family. I tried to focus on things I could do not what I couldn’t. Everyday I went to that gym and with the support of the staff and others around me I started to benefit. I went from only managing 5 mins to longer and longer. I wanted to be able to do a normal activity with my children and I’d been inspired by the tour de France with seeing people on hand bikes taking part. My dreams of adventures with my children had been re lit. Of course I wasn’t planning on entering an international bike race but to cycle with my children was the goal. I did it I’d started going to the gym at Christmas then that summer I had my first bike ride on Fleetwood promenade. Then we wrote the lights . I even went to a superheroes triathlon and rode a handbike for the cycling part with Team Brit a racing car team . After getting there with cycling I wanted to further my progress and try other exercises. I’m so lucky to have had the support from the gym I attended. My condition is a neurological one called fnd (functional neurological disorder). The way it was explained to me is that the hardware in my brain is fine but the software sending signals to parts of my body was broken in some parts. My symptoms are varied and but it effects my muscles, balance, breathing, sensitivity, eyesight, thinking, sensations…….and so on. I had to go to London hospital for four weeks of intensive occupational, physio and psychological therapy. I live in Lancashire but not much is known about fnd hence travelling further for treatment was the only option. I believe more is known about fnd now so more treatment should be available locally. Luckily I had support to help me work out ways of working with my body. So I could get some use out of it.Then covid-19 hit. I already touched on what happened on my last post but some things I never spoke about was how gyms closed and when they re-opened the council supported ones were un manned during the daytime. As the gyms were unmanned I couldn’t risk going alone as if I needed assistance with a machine there wasn’t anyone there. My disabilities increased after having covid. I have decreased sensation in both my arms one foot and my thigh. I have deformed hands that look like claws. The extra disabilities are being investigated but as I’ve had them since oct’21 or just thereafter, the recovery doesn’t look likely. I came out of hospital in April ’22 and since I have carers 4 times a day to help with my personal needs etc. My husband helps too. I was stuck in for probably about a year with having no electric wheelchair suitable for my needs. I do have a wheelchair now but am limited on what I can do as I require assistance with most things and even though I’ve asked for more social hours I’m waiting since July to be assessed for a personal Healthcare budget to arrange the hours I want support for . Continuing Healthcare Commissioning is a farce. It would help me if I could go to a gym but I need support. I need help putting my ventilator ,wriststraps ,ankle straps equipment setting up etc. We were on working and child tax credits but had to change over to universal credit. I’m now being asked to prove I can’t work by getting a sick note from my doctor. I have to do this despite showing them that I’m on highest award of both categories of pip. So I’m wondering if I’m going to be one of the people being forced to work from home. Believe you and me if I could work and earn money I would love to but I’d have to have a carer work with me to assist in whatever. The point I’m at now is feeling like I did way back at the start of my journey. I honestly don’t see any benefits to me being on this planet. I feel like a rubbish mum , grandparent , wife and person. Everything is so difficult to achieve and when you are ill it seems an impossible task. I feel like a failure every day. I’m 49 and feel like my life is over. What is my purpose? I write this (every letter typed in with my right thumb) with tears rolling down my face because it’s all just too much. I can’t just go out when I want to , I can’t cook ,clean , wrap Xmas presents. I can’t even travel down the road in my chair safely as cars block the pavements . I can’t get in a ridiculous amounts of places of businesses as they don’t have access. I seriously just want this all to end. This is the reality of being disabled. You aren’t included or provided for in our society . My body, voice and spirit is broken. I can’t go on feeling this way but feel powerless to change it. This is my reality. I don’t share for sympathy I share this so you may get an understanding so if you have a relation, neighbour , colleague or a friend in the same position you can get a small insight as to how they may feel at times ,just maybe it might make a difference. I’m not feeling so hopeful for me though. Sincerely Joanne