A brief introduction before I start this. I always write my blog posts for myself and this one probably more than any other. I dictate rather than type, so speaking it all out loud is both therapeutic and cathartic. I cry as I speak and it does me a lot of good.
However, I am aware I’m putting this in a public sphere. It’s not particularly positive or uplifting, but there is no need for concern. I have good personal and professional love, help and support and I am not looking for sympathy.
You also obviously don’t have to read this if you don’t want to! I’m just going to be honest and get it out of my system a bit. Trigger warning about mental health issues.
In a way, this is really two years on, as on December 21st 2018 I was discharged from hospital into a nursing home and then moved into my own place November 2019. My life changed completely at the end of 2018 and is still unrecognisable and unfulfilled at the end of 2020.
The transition from working full time to hospitalisation to living in a nursing home to living back in a home of my own but not working and having full-time care is one I have still not overcome.
A few links to relevant blog posts if you want them:
In Starting Again I write about everything I’ve lost in order to begin to accept it and start again. I knew it was going to be a struggle and it certainly is.
I have since gained a beautiful home and a very different lifestyle to the one I had in the nursing home but I’m still grieving for all I’ve lost. I continue to lose independence and more due to MS and life in general. I find life very difficult and cannot seem to come to terms with how it has ended up for me and how to face to future still to come.
Before we go any further though, I must make it clear how unbelievably lucky and grateful I am to have left the nursing home and had my colostomy and suprapubic catheter operations last year. I can’t even think about how things could have been were it this year.
My mental health is poor. Constant grieving goes alongside having a progressive illness. I share this cautiously but feel the need for more public openness if others do read this and thank others that have gone before me in being open about their mental health; I have self harmed and have suicidal thoughts. Note my comment above about receiving professional support.
My ability to access NHS mental health services has been dismal and I know I’m by no means alone. As always, it’s not the wonderful people working in the NHS, it’s the lack of funding.
In 2017 my MS nurse was happy to tell me they finally had a counsellor for patients so we filled out the referral form. She came back devastated to tell me that I was too depressed for the counsellor’s services. Luckily, I was in a position to be able to afford a private counsellor.
In September 2018 my neurologist was very concerned about my mental health and referred me to the Wellbeing Service, warning me of the long waiting list. I started taking Sertraline, which definitely helped and I took it for six months.
By November I was admitted to hospital. My mental and physical health had both fallen apart. I had a couple of meetings with a mental health nurse in the hospital but they were brief as he had such a huge workload.
Once in the nursing home in 2019 I finally heard from the Wellbeing Service and had a referral for an assessment. I chatted to the assessor for about an hour and a few weeks later heard back. They were sorry, but my needs were too complex to be met by their service.
Whilst in the nursing home my MS nurse came to visit and was once again happy to let me know that they now had a psychotherapist for whom you could not be too depressed to see. She put me on the waiting list, which she warned me was long.
I was lucky enough to still be in the position to be able to pay for private counselling sessions.
These stopped when I moved into my new home and I contacted my MS nurse to find out whether I was any closer to seeing the psychotherapist. She was once again devastated to have to tell me that they had lost that service.
Just as a darkly funny aside, in 2017 I rang The Samaritans for the first time. While I was talking I could hear an alarm going off in the background which I tried to ignore and the Samaritan I was talking to was obviously doing the same. It was seriously loud though. Eventually, I asked him whether everything was OK his end and he apologised profusely but told me he was going to have to end the call and that was the end of that. The Samaritans hung up on me! He did a good job though because I was laughing about it afterwards.
I have rung them a few times since and they really are brilliant. One of the most wonderful and important people in the world in my life is a Samaritan and I know if anyone were to get her at the end of the line they would be in the most safe and caring hands. If you need them, call them. https://www.samaritans.org
I started looking for a psychotherapist but they were neither wheelchair accessible nor affordable (£175 an hour?!).
Then, a lockdown benefit; a friend was in a local mutual support WhatsApp group and a psychotherapist was offering a free consultation for frontline workers and vulnerable people. She put me in touch and I have been seeing her weekly ever since.
She is affordable and local. We started on FaceTime but she is classed as a key worker so is able to come and see me at home despite tier restrictions. She is my absolute lifeline and this time I’m in it for the long haul. It’s hard, traumatic work and the sessions are exhausting but lighten the load a little bit at a time.
My physical health restricts my life greatly. I am stuck in a body I absolutely hate. I have carers 12 hours a day. Two in the morning for 2 hours to get me up, two in the evening for an hour to put me to bed and one with me all day.
I have developed a strange daily routine and get everything done in the morning and spend the afternoon alone in the flat in a reclining chair. I get up at 9.30, eat breakfast at 11.30, a main meal at 2.00 and go to bed at 8.30.
I can’t move my legs or feet and my hands and arms barely function. I am not able to do any personal care or dress myself. Last year I could brush my hair and a couple of months ago I could brush my teeth but can’t any longer.
My stoma and catheter have to be dealt with throughout the day.
I sleep in a hospital style bed. I am hoisted with a ceiling hoist in and out of bed, a shower chair, my powered chair or my reclining chair.
I can just about eat meals myself but have to wear a bib and I won’t even allow my carers in the room while I eat as I find it so embarrassing. They often have to assist me to finish a meal. I drink hot and cold drinks through a straw.
I can still use my phone, the TV remote and the position controls on my bed and reclining chair, although those actions are clumsy and complicated. I listen to music, audiobooks and podcasts and watch an obscene amount of TV. I can’t move around at all but at least I’m left alone for 4 or 5 hours a day with my carer on call.
Thankfully and joyfully I am able to get around independently in my powered chair. Lockdown has made me lose confidence in going out alone because I didn’t do enough of it and this is something I need to work on. I can’t physically get in and out of the flat on my own but once out I can have some freedom.
At the back of my mind though is the constant knowledge that I may well eventually lose these freedoms.
I do my best with self-care. I eat a healthy, mostly vegan and gluten-free diet. I have an exercise bike that pedals for me and I can exercise my arms on. I have reflexology and massage when I can and occasionally I remember to meditate.
I have wonderful friends in Brighton and beyond who make time for me around family and work and show me amazing support. They keep me in touch with the real world beyond carers and my strange everyday. We chat, we listen, we laugh and there are sometimes tears (usually mine).
Another lockdown benefit was that we reached out to each other more than we would have done normally. It also meant I got to hang out in the little garden with some of the residents in my block of flats. A mixed bunch of wheelchair users with a wide range of disabilities and big hearts.
My family are all over the country but we keep in touch all the time and we know we are always there for each other. I am completely blessed by them and they are my tether to the person I once was as well as to who I am now.
When mum came to stay January 2020 she asked me the question (a mother’s intuition.) ‘Are you lonely?’ I cracked. I am so glad she asked and I am so glad she was there to comfort me.
The answer is yes. Would I like a loving partner? Yes, of course. I miss male company, affection and intimacy, and I am having to come to terms with the fact that my past relationships were never really healthy or loving.
People make the point about how relationships are difficult, complicated, stressful and so on. Believe me, I know. But once the opportunity and possibility of at least having a shot at one disappears the yearning for it and grief over it are great.
I miss working so much. In some ways it is wonderful to be retired, have time, less stress and I am in absolute awe of my teacher friends as to how they have coped this year. But how I miss the company, comradeship, pupils, intellectual challenge and conversation. I am sure some of my mental health problems are due to not having any distractions from my own head.
I set out some aims in Starting Again. I have not made any progress in campaigning for more suitable housing for younger people with disabilities nor have I developed a part of the PSHE curriculum around childlessness not by choice. They are not forgotten though.
What I have done is get involved with Extinction Rebellion. 2020 and all it has brought, David Attenborough (although he is not fully supportive of XR), Greta Thunberg and Margaret Atwood all led me to XR.
I am making (at the moment zoom based) connections with people locally, nationally and internationally, educating myself, and trying to do something with like-minded people to battle the inaction and destructive actions of governments, global companies and institutions through non-violent direct action and civil resistance.
It helps with the feeling of powerlessness about the state of the planet and the powers that be and gives me the feeling that I can say to my nieces, nephews, godchildren, friends’ children, ex pupils and the next generation ‘I tried’. https://extinctionrebellion.uk/
I lost my connection to the childless women community but have recently rebuilt it and am fully engaged again. It feels good to be part of such a strong, brave, resilient sisterhood. https://gateway-women.com/
So, that is my life in stark reality. I am surrounded by amazing family and friends yet deep down in some ways I’m still unhappy and lonely.
I am well cared for but I don’t want to be disabled and I don’t want carers.
I have ended up living a life I didn’t choose or wish for and have little power to change.
The thought of the years ahead of me while my condition progresses is exhausting.
I often feel that I am losing the Nina who is trapped inside this body but I’m trying my best to hold on to her with the help of others.
Do I feel better for having written this and got it out of my system a bit? Yes. That is how it is, warts and all. I’ve been honest, said it out loud and it’s out there now.
2020 has for obvious reasons been a dreadful year for me, my loved ones, my outer circle, the UK, the world. I am not alone in my suffering and many are suffering far more greatly than me. How we all keep going amazes me, but we do. There are always some ups and some highlights that keep us going.
The world is falling apart climatically, ecologically and politically. People are coming together in wonderful ways but are more divided than ever in others.
I have made some steps towards change for next year so I wonder where I will be a year from now and I wonder what state the world will be in a year from now. The world keeps turning and life goes on…