This week’s blog is written by Heather Delaney, a Trustee and Secretary at Fibrous Dysplasia Support Society UK (FDSSUK).
Heather was diagnosed with Fibrous Dysplasia at 10 years old. She has had multiple operations throughout her life and manages her own chronic pain. She also has problems with her thyroid, fatigue and spine. Heather joined FDSSUK as a member around 10 years ago, hoping to learn more about the disease and meet other patients. Heather now volunteers for FDSSUK and is the secretary. She is very passionate about raising awareness of the disease, and enjoys being part of a community that allows her to interact with other patients and carers.
Fibrous Dysplasia is a rare bone disease, which weakens bones and causes deformity and fractures. It can affect any number of bones in the body, and be diagnosed in early childhood or in adulthood. It is caused by a defective gene, but it is not inherited. Fibrous Dysplasia can also be associated with cafe au lait skin pigmentation and other endocrine issues, which is part of a wider condition known as McCune Albright Syndrome. There is no cure for the condition and the severity of the disease differs from patient to patient.
Heather’s Lockdown Journey
Going into lockdown, I felt positive. I knew it was coming and I had mentally prepared myself for it. I have been managing my own chronic pain for many years now; I pace all my activities and use distraction methods. I live alone with my 15-year-old son, so I am fairly independent and do as much as I can for myself.
Week one of lockdown started well. I would go for my daily walk in the mornings and spend the afternoons doing odd jobs, catching up on TV, cooking and helping my son with his schoolwork.
Going into week two, I still felt positive, but I was starting to feel my pain levels creeping up. I usually have help from my family with household chores, but I was doing them myself, in moderation, as best I could.
By week three, I was really starting to struggle. I couldn’t get a supermarket delivery slot, so I had no choice but to go out and do it myself. The queues into the shops were horrendous and the shelves were empty. What shopping I did manage to get, I couldn’t carry. I soon noticed that extra walking and activities were irritating my hip, leg and back.
I woke up one morning and the pain hit me like a sledgehammer. It had gotten to the point where I could no longer cope with my pain levels. There were days where I just couldn’t function due to severe fatigue. I was really starting to miss my family, who live just around the corner, because I couldn’t see them. I wanted my parents to keep their distance to make sure that they were safe from the virus, but we usually see each other everyday. I didn’t want them to worry about me.
Being indoors for hours and hours with no adult company was taking its toll on me. I was worrying about weight gain since I couldn’t do any exercise at all. The more time I spent resting, the more stiff my hip and back became. I could feel the sciatica pain starting. To stop this from happening, I would limit my time sitting down and get up to do another chore. This would cause even more pain and extreme fatigue, so I would end up having to rest for longer periods of time to overcome the exhaustion. I could feel myself becoming run down and the shielding letter did not arrive, as I don’t fit into any of the vulnerable categories.
I didn’t want to ask for help from the community, as there are people out there who need it much more than I do. I didn’t want to become too dependent on my pain meds, because they only mask the pain and make me feel sick. All of my hospital appointments were cancelled and pushed back months. I wasn’t sleeping well, and I couldn’t get comfortable anywhere. I knew at this point that something had to change; I needed to find new ways of coping to get through each day. Lockdown could last a very long time.
I have been isolated before over the years after many operations where I have been housebound for months. This type of isolation was on a completely different level from any of that. Not being able to have people visit is tough. Life was completely silent and it felt strange.
After about a week of solid severe pain, I started to feel more like myself. My son was helping me with all the household chores and I managed to get my first Tesco delivery (I felt as if I had won the lottery).
We decided to try and bring some structure into our day. We would go for a walk every morning, and depending on my pain and if I felt up to it, would do one household task together in the afternoon. I tried not to get stressed out if I couldn’t do something (it was hard), but I managed it. We found things that we could do together to pass the time, like playing games and mini projects.
My family were unaware of what was happening, but once I told them they started taking more time to phone, video call and message me throughout the day. They organised a family quiz night once a week, so we could all see each other and have fun together. Sometimes when I was out for my walk, I would come home to find that they had left things for me, such as flowers, chocolates and important essentials like hand soap and kitchen roll. Little gestures mean so much.
Grocery shopping is still a major issue, as delivery slots are still hard to get. To try and overcome this, we order a large shop for delivery every two/three weeks. If we have to go to our local supermarket, we go early in the morning before it gets busy. This means that we are carrying less shopping home and I am not getting stressed out.
I have realised that having a daily routine and structure helps to keep my mind active, and that talking to family helps so much. Each week that the lockdown continues, I still have some painful and challenging days, but I have learnt that if I am not well enough to do something, it is fine to leave it to another day.
The one thing that I have managed to maintain during these past few months is getting up early and getting washed and dressed everyday. I knew that if I didn’t do it, things could get much worse for me mentally. I realise now that I was pushing myself too hard trying to keep the boredom away. I wanted to be able to do everything for myself and felt disappointed when I realised that I couldn’t. I am hopeful that life will return to normal, but until then, I will just carry on and take each day as it comes.
The first month of lockdown was definitely the toughest thing I have ever been through. I am so glad that I have had my son at home with me, as he has been amazing. He could see that I was becoming ill and doing too much, and tried to tell me numerous times. I guess I found out the hard way.