Hello Health Unlocked Community,
I have been thinking about how people are coping in relation to their mental health during this time of social isolation due to Covid19 I would be really grateful for people's ideas, that would be useful to share. This site is important and the MSA Trust virtual groups are going well.
Thank you Jill Lyons MSA Nurse Specialist
Jill
The biggest key is to plan a routine and also maintain plenty contact through the telephone and video with family and friends.
Plan daily weekly and monthly activities even the mundane ones as this gives you purpose.
Also challenge yourself with a project such as learning something, making something setting a new goal.
it's about keeping distracted
Paul
Thanks Paul and Sue, indeed good ideas, any one else have good ideas?
Routine is most defenetely the key. We have been lucky in so far, we both worked from home before all this started. Me for a company doing data entry and hubby in his cellar on his own business. So maybe we have been lucky as for us not too much has changed. Hubby did not like going out anymore well before this madness started, due to his illness and his osteo arthritis in both knees prevents him walking anyway. But he has decided now with his limited mobility to start home improvements! LOL but it keeps him busy and happy, so I am all for it. His speech is also going downhill so whatsapp with his daughter is a daily check in.
With my mum I do whatsapp face call every other day, to keep in touch and keep her spirits up as she also has to take self isolate.
We got today the letter to state husband is on the list of people at risk, but we got a fruit and veg delivery and tesco will delivery tomorrow, so we are all sorted and the community will pick up any meds. Local facebook groups are invaluable and super helpful with tips and hints, so search them out! Draw or knit or crochet rainbows! LOL and try to keep active. Lots of free online tutorials, from drawing to yoga etc..
Hi Jill
Ive been saying to so many people that the last two years has prepared me for this lock down and I am finding that its relatively easy to cope with by following the learnings from my time as a carer
Some of the success factors for the last two years in no particular order:
- Drawing on the community of support.
Previously this was the DN's Care staff, Hospice, family and friends. They are still there and we stay connected via WhatsApp etc. As before.. this doesn't mean spending huge amounts of time but more staggered and intermittent but creates a feeling of a thread of connection.
- Learning
It gave me the chance/time to really learn something new
I started welsh classes on Duolingo ( Gill was a welsh speaker ) and it gave her huge pleasure to hear me mis pronounce virtually everything. I've persevered and its still part of a daily routine.
Gill pushed me to start keeping bees. There is a large body of knowledge on this topic and so much to study with very good online courses. Its practical and can be applied. Its created tasks that have to be dealt with and skills that must be learnt. There must be an infinite amount of things that would provide similar opportunities
- Keeping fit
I realised that my own fitness and sense of well being was essential to ensure Gill was ok. I'm not very fit but not unfit and the daily walk became part of an important routine to leave the house, what ever the weather, and walk hard enough to lift the heart rate. I think this is a critical aspect of staying well and feeling positive.
There were a few other routines i developed that were hugely helpful, not by themselves but as part of a broader picture of a number of meaningful activities that built up over time ( it all starts with one step)
All these things have seamlessly transferred into the shut down and i find the days have some structure and i can tick off some things "done" at the end of most days.
Perhaps the single most helpful thing we did was to reflect daily on how lucky we were to have what we had and not reflect on what we didn't. Certainly a truth in these difficult times
Hello Jill, I guess I've got more time for self care, as I am not full time caring right now. This one goes out to all the perfectionists out there 🙂. Meditation and physio exercises feel almost as important as eating and drinking. Setting up a variety of different self care activities, so that if some have to be missed out, at least there will be others to keep things on an even keel. I think a sense of being in control helps. So I'm avoiding watching random tv, as it makes me feel directionless and yukky. Instead planning specific things to enjoy. Its taken a while to realise that fun needs to be included in daily routine planning! Trying to set reasonable daily housework or other goals, otherwise whenever you look over, there's that sinking feeling that you haven't managed it yet. 😋 Not expecting too much of oneself, as there's an extra level of change and uncertainty to cope with. Staying connected to others definitely, and nature if possible. Hang in there everyone! Kx
Oh yeah, and overlooking cabin fever induced grumpiness in others and not taking the bait😋
Small acts of solidarity with others seem to have a massive feel good factor at the moment too.
Next steps: living will, DNR and options
A chance to help the MSA Trust
Since when does MSA have a silent A in its title?
National Autonomic Unit at UCL 
Finally got our diagnosis 
