My lockdown journey

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19 February 2021

Heather tells us about impact of lockdown on her rare disease

Going into this second major lockdown, I felt positive. I found the first lockdown really tough. It started off well, I had made a plan on how I was going to keep myself busy. But my pain totally overwhelmed me very quickly and I struggled with isolation and wellbeing. I had no idea that I would struggle so much. After being diagnosed with fibrous dysplasia at age 10, and suffering chronic pain and isolation throughout my adult life, I thought I was doing well. I couldn’t believe that 30 years later it would hit me like a ton of bricks. It just goes to show that you can never underestimate a rare disease.

Finding balance

I have been managing my own chronic pain for many years now. I pace all of my activities and use distraction techniques to take my mind off the pain. I live alone with my 15 year old son, so I am fairly independent and do as much for myself as I can. I usually keep myself busy by volunteering for my rare disease patient group Fibrous Dysplasia Support Society UK, and I make sure that I get out of the house everyday and rest when I need to. Trying to find the right balance of daily exercise, housework, shopping and sitting down is difficult for me. Each of these activities cause different pains on a normal day, but during the first lockdown, I was experiencing them all at the same time all day everyday. Add in fatigue, anxiety, boredom, stiffness and depression, and it was all too much. It was like being stuck in a long flare-up. I don’t fit into any of the vulnerable categories, so I didn’t receive a shielding letter. It was down to me to take action. I really didn’t want to suffer like last time.

Challenges

This time, I can see my parents, we have been able to form a support bubble. Last time I couldn’t see them at all and they live on the same road, this was very upsetting for me. We try to see each other everyday for a walk and we keep each other company. I kept my isolation and pain issues from them, as I didn’t want to worry them. They did find out towards the end of the lockdown and they were amazing.

Food shopping is an issue for me, as it was the first time round. There are no supermarket delivery slots available, so I have no choice but to go out and do it myself. The queues are not so bad this time, but I am unable to carry much. I have no car, I have to rely on public transport.

Like last time, I am struggling with walking, as this causes pain. I need to rest numerous times when I am walking outside and it’s difficult with no cafes open for me to sit down and rest. Luckily, there are benches available, last time the benches were taped off and I found myself resting at bus stops and sitting down on random garden walls.

I must admit, being indoors for hours and hours is starting to get to me now, three weeks in. My mood seems to be harder to maintain this time. I am worrying about weight gain, as I can’t do any other exercise at all. I don’t want to become too dependent on my pain meds, because they only take the edge of the pain and cause sickness. I don’t want to get into the habit of sitting down all day, or staying in my pajamas. My pain levels are slowly creeping up, but so far I am coping. I do have some really painful and challenging days and the fatigue is worse.

I have been isolated before over the years, after many operations where I have been on crutches, unable to bear weight for months. This type of isolation is totally different. Not being able to have people visit is tough. Life is completely silent at times and it feels strange. Nothing can prepare you for that.

Lessons

I learned many things from the last lockdown, the main thing is having some structure to my day. Having a daily routine helps to keep my mind active and talking to family and friends helps so much. I have now accepted that if I can’t do something, it’s fine to leave it to another time. I noticed that I was pushing myself to do things around the house and have long walks just to take my mind off the pain, but it was causing me more pain and discomfort. I was also sitting down for far too long thinking I could ease the never ending pain. I had to find a way of balancing everything.

I am hopeful that life will return to normal, but until then I will just carry on and take each day as it comes and make adjustments to my routine wherever I can. Alongside my work at Fibrous Dysplasia Support Society UK, I have decided to find some hobbies that I can do at home to keep myself busy. My son is a fantastic help around the house and even though he is studying at home, he always finds time for me.

If you would like to share your thoughts on lockdown and Covid-19 please get in touch, covid-19@geneticalliance.org.uk.