We asked you what you're doing to keep positive and stay healthy during lockdown this time round. The COVID-19 pandemic has affected everyone across the UK for almost a whole year, and we have been in touch with our members to find out their top tips on self-care whilst living in lockdown with MPS, Fabry and related diseases.
Amy - MPS I Hurler
During lockdown I have realised how important having my cat, Caspar has been for me. When I have had low mood or not feeling my best, he seems to pick up on it and sit or lay by my side.
I have also made a good effort to take on advice from my general practitioner, because of Covid-19 my trip to receive hydrotherapy will be a while away, luckily I was told that using a foot spa could help, I was able to get myself a foot spa that I can use from home which will hopefully help with my swelling.
Another saving grace for me has been the extra hours given to my carers from social services, which has made this time less isolating and they have been able to go out on my behalf and get my essentials like food or home supplies.
Amy's top tip
Take comfort in your furry friends, make use of the care and support available and take on any advice given to you from your general practitioner for alternative ways to stay physically healthy from home.
Janet - Fabry
If you are feeling a little low, do something that helps others. Make masks, find ways you can help, check on your neighbours. The gifts and talents you possess could be someone else’s saving grace, and helping others will make you feel good.
If you have some extra free time make sure you’re taking a few moments to work on things you enjoy. If you like baking, if you can crochet, reading a book etc.
Janet's top tip
If you’re still able to get food, sleep in a safe place and feel healthy, make sure you take a few minutes each day to remind yourself how lucky you are. Focus on what you do have, rather than what you don’t.
Jacob - MPS I Hurler
I have kept lockdown positive by giving myself a weekly routine which involves: calisthenics/ body weight workouts, reading, art, board games and walking our dogs. With all of these activities I can develop the level of difficulty so that I can feel as though I am always achieving something, and this keeps me motivated to keep on doing them.
Jacob's top tip
Create a weekly routine of activities that you can develop over time. I have chosen a mixture of activities for my physical, mental and social wellbeing.
Myles - MPS I Hurler-Scheie
To pass the time I continued my volunteering for AgeUK, watched TV, read books. I was tending to a minor medical issue as well. In the first lockdown I kept looking forward to the end date and sometimes I’d lose patience. When it actually came and I was told that the shielding was over. I was left feeling perplexed. On the one hand I was told shielding is over and on the other you can go out but don’t go near crowds, keep your distance from other households, wear face coverings you’re still vulnerable. By the time you’ve taken all this safety advice on board you may as well stay at home. I then realised that this situation was never going to be a short term event and actually removing any end date made it easier for me to stay home these 8-9 months.
From then until now I’ve expanded my patio, had my bathroom door replaced, stopped slugs from invading my kitchen, increased security at home, updated my sofa, updated bits and pieces around the home, kept in contact with friends. Dad has taken me for drives out in his car, but I stay in the vehicle most of the time. To be fair I’ve done things at home which without COVID-19 would have been completed over a few years, so I’ve made good use of the time.
Myles' top tip
The key to coping with this is simple really, just have to accept this is the new norm.
Sally - MPS III Sanfilippo
For many years I had very little time to devote to hobbies, as I was Mum to two children Will and Sophie. Sophie had Sanfilippo Disease, and sadly died when she was 19, five years ago. Will is now 25, so things have changed a lot for my husband Tim and myself.
During lockdown, I have taken the opportunity to do more craft activities. I have knitted on and off for years, but I have moved on to bigger and better things as can be seen in the picture of a blanket I have created. It was a simple pattern and an easy one to do whilst watching TV! Anything too complicated and I make mistakes trying to concentrate on two things at once. I have been enjoying tapestry work too, this was new to me and I have enjoyed making greetings cards.
I am an avid reader and a few years ago formed a Book Club with a few friends. We now meet every 6 weeks using Zoom. This has encouraged me to read books that I probably would not have considered previously. There have been very few which I have not enjoyed, and I am quite often taken out of my comfort zone! Some books I recommend are Where the Crawdads Sing by Delia Owen and The Switch by Beth O'Leary.
Sally's top tip
I have had the opportunity to do things I don't usually do and throroughy enjoy them.
Read more everyday stories from individuals and families affected by MPS, Fabry and related diseases on our Your Stories blog. If you have a story you want to share let us know, we love hearing from you and sharing your news. Other helpful resources for self-care: 10 keys to a happier life
