Where to start! What a crazy, surreal time we have been, and are still going through.
I never received an NHS letter to shield during the lockdown. I guess mild asthma and the MS disease modifying drug (DMD) I am on didn’t match the Government’s criteria for the ‘critically vulnerable’ category, so I fell under the ‘moderately vulnerable’ category.
I was a little shocked to be honest, but understand we all couldn’t be shielded so it was up to me to make a personal decision. I decided to self isolate and started on 17th March. At the beginning it was a case of ‘ we are so used to this anyway, it’s going to be just like normal’! The only difference was, for the first month or so anyway, waking every morning thinking ‘we are living through a pandemic’…
‘Just another day during lockdown’…
So, what have I been up to since 17th March? The usual pottering around the house and garden, going out in the car to the shops with M while he goes in and gets what we need. We’ve been on walks and found a new route which has been awesome, and it has been so quiet also!.
I have and still am, in the habit of getting up washed and dressed, and having breakfast at more or less the same time every morning. As M is working from home down stairs, it has been nice to be able to clean upstairs and managing to keep on top of it! I then rest upstairs, or do what I need to do. When M is in the kitchen cooking in the evenings, that’s when I can get the vacuum cleaner out and clean downstairs. Honestly, you don’t know what joy it brings me to be able to clean the ‘whole house’ in one day! Something I haven’t been able to do in a long time.
I have upped my Yoga and have been using the dumbbells since March, and I think the little bit of energy I have had to be able to do the simplest of chores must have something to do with it. Saying that, as you know with MS, it’s not all smooth sailing!. I have had a few days here and there when fatigue has just taken over, but the beauty is I am not worrying about the MS fatigue lifting in a hurry, as what’s the rush?. It has been nice to be able to take to my bed and rest it out for as long as it takes.
But the dumbells in particular, is where I have noticed the strength come back especially in my left arm. When I started, I couldn’t do one bicep curl with my left arm without helping it along a little with my right hand. Over about 4-6 weeks (I should have kept a log), I slowly managed to do about 3-4 bicep curls still with a little help, but over the last couple of weeks I have managed to do at east 8 bicep curls with my left arm with no help from my right! Progress is slow, and then you suddenly realise what you have achieved. It was the same when I first started to do Yoga all those years ago. I had no balance, everything hurt, and then one day I found myself in a pose and it felt so comfortable. When you can see and feel the benefits, it makes all the sweat and tears worth it!.
And of course, M has still been cooking delicious meals!
‘MS Milestone’…
I had my annual review with my Neurologist at the end of May via telephone. We had the usual chit chat, how have I been, discussed Plegridy (the Disease Modifying Drug I am on), and we decided I will be staying on Plegridy for the time being. I have been using Plegridy for four years, and apart from the usual site reaction marks and the flu-like symptom side effects, it does appear to be doing what it should be. i.e keeping those relapses to a minimum and stabilising those lesions.
We also discussed a Milestone which was nearing. On the 28th June marked 10 years of living with MS. 10 years! Doesn’t time fly when you are living with a chronic illness!.
I had a bit of a wishy washy diagnosis. I was told back in early July 2010 it could be mild MS, and this continued for a couple of years. I lived with the ‘may be’ diagnosis of mild MS for a few years and after one too many relapses in 2014, I was then diagnosed with RRMS (Relapsing Remitting MS). I have now been living with RRMS for five years.
Has it been easy? Not at all. It has been a tough ten years, especially at the beginning. However, slowly but surely my mind set changed, I had to re-evaluate my life and do what I needed to, to keep this disease I had never heard of before at bay.
Grateful? Yes, in a strange way. I hate living with MS, that’s a no brainer, but I have learnt over the years to appreciate absolutely everything. My family and friends, new friends I have made along the way especially the online community which is out there – what an awesome support network that is.
I could reflect for days, and as much as a huge milestone has been reached, it also brings with it a lot of sad and lonely memories. Not only for myself, but for those around me also. As much as I am proud of myself, I am not getting too complacent. MS is so unpredictable and you just don’t know what each day is going to bring. But I have to keep doing what I am doing, not to give up. And if it takes another ten years, so be it.
I still take one day at a time, I have to. I still appreciate the little things. I still stop to smell those roses.
Keep smiling, keep safe, wear that mask, and keep smelling those roses!.
Namaste. x
myMSrollercoasterride 