Jenny Hi, and how is everyone?!
I’m so conscious I keep having “quiet periods” in my blog and I am getting frustrated with myself because of it!
It’s certainly not the case that writing doesn’t help me to deal with my Multiple Sclerosis; I think it more accurately reflects that I’m struggling a lot with my energy levels at the minute. I’m trying to keep home, be a good parent to my teens, support my husband through a period of grief, keep well with my MS through exercise and healthy eating, work for a few hours a week and be a blogger. Actually, when I write it down like that, I’m not surprised that I’m so exhausted and blogging seems to have drawn the short straw!
I can’t quite believe that we are already tiptoeing into the latter half of the year – though it certainly feels that way with the UK weather at the moment. I guess the fact that I don’t feel like I have actually done anything of note is helping me feel this way. When I was medically retired from my NHS work back in 2018, I think that I thought that it would give me the opportunity to try some new hobbies or to develop some new skills. But I guess the reality of retiring because of an incurable, progressive illness means that the energy to do so might not be there.
I’ve really noticed that this year, my Secondary Progressive MS has, well, progressed. The spasticity in my legs has worsened, which means that I am now using crutches in the house instead of “wall-walking” like I used to do. I’ve been having more falls and struggling to generally get around my house – what I wouldn’t do for a wheelchair-accessible bungalow! Unfortunately, my husband and I are not in the position to sell up and move to one, due to the extortionate cost of them here in our town, so we are in the process of looking into a Disabled Facilities Grant (DFG). This grant would help us to have a downstairs toilet and shower room in our Victorian house. I’d love to hear if anyone has any experience of getting a DFG. I’ve heard horror stories from the occupational therapist, who is looking into it for us about people waiting for three+ years for the changes to be made… it makes me think, what is my MS going to be like by that time?!
I think that I need to remind myself about how much better I feel when I make an effort to get out of my comfort zone. And when I say “comfort zone” I generally mean sitting on my sofa and being distracted by games on my iPhone. On those days when I make myself feel like I’ve been productive – whether that is putting clothes on Vinted or making that phone call that I’d been putting off – I do tend to feel emotionally better. So perhaps if I made myself a little list and wrote it here on my blog, it would give me the impetus to actually get some stuff done?
The List:
- Get back into meditation, even if it is just by doing the “Daily Calm” on my Calm meditation app. I know how much it helps my mental health, so focus on that to motivate myself to do it
- Remind myself about how I previously helped myself by re-reading my previous blogs, such as:
6 Tips to Keep Working at Health Goals
- Admit that, yes, even yoga can be challenging for me now, due to my spasticity and balance, but that doesn’t mean that I shouldn’t do it; there are plenty of good chair yoga classes on YouTube that I have done, and enjoyed, previously. Try and do one, 3x a week.
- Accept the fact that, in order to feel as well as I can with MS, I might need to make some cutbacks in other areas; I’m primarily thinking of work. Just like when I worked for the NHS, the amount of energy used in order to keep up with the – admittedly tiny – number of patients that I have now, is still just too much.
- Leading on from that, think about how you can still use your speech and language knowledge in a way that could perhaps be utilised online rather than face-to-face.
Okay, that is my list. I feel like I could make it much longer, but then I know that might just be overwhelming. My plan is that I’m going to use it as a source of motivation to get started again with all the things that I know help me to live with my MS and to stay accountable for my actions.
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Have you got any failsafe ways that you stay accountable for your health and wellness? Do you find that lists help you to stay focused and motivated? I would love to hear 🙂
Till next time,
Dear Jen, I have read your blog on disabilities & wheelchair users. You have given a realy good insight & description of sorrento Italy. I’m a little worried that I have made a mistake after reading your review, I am going in Oct2023 & use an electric wheelchair can you tell me if sorrento & sights are suitable for me. Also could you tell me if there are taxis at airport have ramps or lift that can take an electric wheelchair in the back. Or if the airport shuttles to take you to your hotel have wheelchair access or lifting platform. I have been trying to find this information out on a few sites even the company we have booked by & told to use request form to choose a vehicle, but none give information to say if they are wheelchair accessible? I want to keep my independence & only want to use a manual chair as a second option.i can not stand unsupport at all. I also have M.S. secondary progression & I want to go & see all the things whilst I can. So I would really appreciate any info, advice & any suggestions. Thankyou Angela H.
Dear Angela, thank you so much for your comment on my blog and apologies that it has taken me a couple of days to get back to you. How exciting going to Sorrento 🙂 It is very beautiful. It was a few years ago now that I went but I remember the centre of Sorrento being easier to get around that the streets just outside it, if you know what I mean. We stayed just outside the centre and it was sometimes difficult using my mobility scooter on the pavements as often there were trees in the middle or a lack of dropped curbs.
I do remember the airport being good, they had a lifting platform that I, and others, were able to use. I remember the hotel said that they were accessible but then there was a step 🙁 So I would recommend double and triple checking that where you are staying will be ok for your needs. If I remember anything else, I’ll be sure to update you. Time seems to have made me forget quite a lot 🙁