How have lockdowns affected individuals with a disability.

Welcome to our Health and Wellness Blog.

We are starting with a blog focusing on those people who have a disability or a chronic illness and how lockdowns are affecting you. Have the lockdowns had an impact on the treatments and medical services you receive? Have they had an effect on your mental health, is isolation and loneliness a problem? Enforced restrictions have given us more time to reflect on our situation and examine how we are coping with our lives?

Nina, who has MS and Katie who has ME have written about their journeys through the two lockdowns and how it has affected them.

We hope these stories may resonate with some readers, and reassure you that you are not alone with such feelings and emotions. We are very keen to hear from you and to offer any support and help you may need.

Hello Nina here, and I am going to share some quite personal information. If by doing this some of you read it and recognise and relate to some of the thoughts, it may give you comfort to know that you are not alone.

I was diagnosed with multiple sclerosis (MS) in 1995. Since 1999 I have walked using a left-hand stick due to problems with my right leg, twenty-two years on and I sometimes use two sticks, especially when outside (if I don’t have my husband Laurence with me holding my right hand) I also use a wheelchair for longer distances, but more about that later.

We are now in the second lockdown, and I am finding it much harder than the first, even though the time of year and the routines we established haven’t changed much from the first one. So why am I finding it harder?

I think on this occasion I have to blame my MS and admit I am struggling to cope with it, and am finding it difficult to admit. All the activities I can’t do seem greater and more insurmountable this time, even getting out of bed is hard, especially when it is so cold and dark.

In the first lockdown there wasn’t so much knowledge about the corona virus and we didn’t realise what havoc it was going to cause. This lockdown we do, and we had a short taste of “normality” in the summer to remind us of what we are missing. So, I am thinking, great you are allowed outside to walk and do exercise, but I can’t!! It’s snowy, icy and cold and my legs won’t work to walk and my hands go white using my wheelchair even with gloves on. It reminds me that six years ago, because of MS, I made the decision to stop driving and it is now, bizarrely that I am feeling depressed about it, even though it was the right thing to do. I can’t get lifts from friends any more, but then what I want to do isn’t happening anyway. No social and charity work groups and, more regrettably, no weekly hydrotherapy session or regular massage. I know my mobility has deteriorated in the past year and it saddens and upsets me, I can’t bear to think what the not-too-distant future holds? It’s frightening and worrying for me; I have only admitted this once before and quite recently. Laurence and I were out for a drive (my first time this year) and I was feeling very low, without realising what triggered it I poured out to Laurence that it is horrible living your life often thinking “is this the last time I’m ever going to be able to do this”. It shook us both, we had to pull over and find the tissues.

I have given my aids names to try and help me to accept and like them. Jeeves was my original wheelchair, now my stick (which did go nameless initially), Wooster is my stair lift, Bertie my mobility scooter and Elmo is my new wheelchair. It took me years to admit that using a wheelchair was helpful and beneficial, to see it as an aid to independence and not an admission of failure. I went through a dark tunnel emotionally and took a long time to realise how much I missed because of my resistance, and how much it affected my family. I don’t feel so guilty now and I really like Elmo, he’s light weight, nippy and fun.

Lockdown has caused a grieving to surface that I have kept suppressed and under control since the start of my MS journey. Maybe I should have acknowledged and dealt with it long ago, but I never had time, now due to lockdown there is. I have realised I am grieving, grieving for the able-bodied woman I was and for what never happened because I got MS. I am aware of the MS pain I experience now because I am sitting around more and have time to think about it, and have fewer distractions to take my mind off it.

I have battled MS for twenty-five years and when I look at my situation my fight has been quite successful. It hasn’t been a full year yet that I have been battling corona virus and lockdown, I will be getting a vaccination sometime soon, and a new “normal” isn’t too far away. So, I will perk up and stay positive, stay as active as possible and find a little joy in something every day.

Hello, I’m Katie, an artist living in Aberdeen. I am 26 and was diagnosed with M.E. twelve years ago. As well as running my arty business, (pre-covid) I am a support worker part time. Over the last year, I have been doing an hour’s video call twice a week with the lady I usually support but without the routine of in-person part time jobs and rewarding work as a distraction, the last year really has had a huge impact on my health and the way I think about my illness.

I started getting repeatedly unwell at 14 and went for many tests, until eventually I was diagnosed with M.E. I have also since been diagnosed with IBS, Joint Hypermobility, Chronic Migraine and Fibromyalgia. I experience Post Exertional Maylaise which means that if I push myself, doing more than I should (often without realising it at the time) I have to “pay” for it for days or weeks to come, suffering a debilitating flare up of symptoms. I also have bouts of dizziness and palpitations due a raised pulse rate and am waiting for a cardiology appointment. It causes a horrible “pulling down” feeling and I have to lay down and put my legs up to relieve it.

During the first lockdown I had so many plans and a long “to do” list, but I struggled to make head way. I was assessed by an Occupational Therapist to  whom I will always be grateful. They made me feel heard and gave me so much practical help for the first time that it made me feel very emotional. They provided me with a wheelchair for when I do eventually get out a little bit more, two walking sticks (I usually just use the right handed one but the left handed one helps me to get up the stairs too). I also was provided with bathing aids and a perching stool which have been life changers for simple things like washing the dishes and preparing food. Even though l am using the perching stool, I still need to lay down after a short while, so I know my health has deteriorated.

M.E. is a very frustrating illness. There is a lack of understanding due to the complexity of symptoms, often without physical evidence through tests and so it is diagnosed mostly through a process of elimination. Through all the horribleness that is Covid, many people are now experiencing Long-Covid. Their symptoms are similar to those of M.E. and to me this makes complete sense, because whilst it isn’t always the case with M.E., it is often the result of a viral infection. It is devastating to hear of the number of people who have had covid and are expected to experience this debilitating condition. Initially with ME there was a complete lack of understanding and empathy for those affected, but people who have Long Covid are suffering too and it is all new and scary for them, just as it was with us when we began our journey.

The lockdowns have definitely changed the way I feel about my illness. Although I often feel frustrated by my limitations, I think the lockdowns have allowed me to slow down and accept that I really do need to listen to my body and pace myself. It is always an inner battle because I am desperate to get things done and have so many ideas of paintings I want to create. However, I am trying to take advantage of this time and learn to break tasks into manageable short bursts. Resting is self-care and preventing a flare up. I try my best to put a positive spin on every day but that doesn’t always happen and that’s okay. With so much love and support from my wonderful partner, family and friends, I am finally beginning to accept my limitations and take care of myself. The last year has brought about a lot of challenges for me and my health, but in between these challenges and my current struggles, I know that some little sparks of hope have already happened. There is hope for us all in the vaccination process and better days are coming.


MSSociety.org.uk

meassociation.org.uk

decodeme.org.uk

Photo by Marcus Aurelius on Pexels.com

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