homeworking – Another MS Warrior

Work

With the start of the new term, I have been back at work this week. Thankfully, my employer continues to advise that all those who can work at home, should do so. As a person with chronic illness and disability, there are advantages to working from home – mainly that I can get up, log on and just get on with it, rather than negotiate the challenges of rushing about to get ready, sorting out a packed lunch and driving to the office. In the past, I would often arrive at work feeling exhausted from the efforts to get there. I don’t miss the parking issues, queues for the lift, long walk to the kitchen or having to go up or down a floor to visit the ladies. Now I’m starting my working day feeling fresh and ready to go and I haven’t used any unnecessary spoons just to get to that point.

You can read more about Spoon Theory here … The Spoon Theory written by Christine Miserandino

My cats have loved having me at home over the last few months and one in particular loves his morning snuggle on my knee each day. He’s not at all happy that some mornings I’m now sitting at my desk and my knee is no longer available …

Of course there are down sides to working from home and I miss the contact with colleagues and face to face kitchen chats to quickly agree actions or find out information (all so much more formal and convoluted by email).

I have no idea what the new version of normal will be in the future, but I hope there will be continued opportunities to work from home, at least for part of the time. I really feel this would help me to stay in work for longer – better for me and better for society. I know that many disabled people around the world are feeling this too.

House move

Over the last couple of months, I have come to the conclusion that now is the time for me to move to a home without stairs. Thankfully, I haven’t had any further falls, but I’ve had lots of wobbles and near misses. I’m anxious about the stairs every time I use them or cross the landing to go to the bathroom from my bedroom. I love my little house and garden and I love the community I live in, but it’s not right to continue living like this for a longer period of time.

I have considered the option of having a stair lift fitted, but that wouldn’t take away my daily fear of falling from the top. I also have a cellar here, which is another challenge, as for some reason no one thought to install a handrail. The loft is also difficult to access and I don’t like having to ask for help whenever I want anything to go up or down. In addition, this house is well over 100 years old and so needs continual maintenance and is expensive to heat.

So, I am now in the process of getting my house ready to sell. I’ve only been here for 3 years, and there was a lot of interest at the time of buying it. The housing market in this area seems buoyant, at least at the moment, so I feel this is the right time to go. I have a plan coming together on where I’m moving to, but will keep that under wraps for now.

HSCT

HSCT has started again in Mexico and I’m already aware of a couple of Brits who have made that journey and are now recovering at home. The clinic in Russia is admitting patients again but I think visa issues have held up any Brits trying to get there. Hopefully this will be resolved soon.

I understand that some patients have started HSCT at the London hospitals, but no one is being treated in Sheffield just yet.

I have an MRI scan in Sheffield on Thursday. Professor Sharrack plans to compare this to the scan I had last July and if he can see new disease activity, he may still consider me for HSCT, which would be amazing. I have very mixed feelings about this. I started a new DMT (disease modifying therapy) a few months ago, which is hoped will reduce disease activity so it would be great if things are calming down. I have a feeling the scan will show a little activity, but not enough to meet Professor Sharrack’s criteria!

I used to find the MRI machine terrifying – feeling trapped, unable to move, cut off from the world and with all manner of super loud clunking and grinding noises going on, but I’m obviously becoming desensitised now, as I haven’t started worrying about it (yet)!

Tecfidera (DMT)

I am pleased to report that the initial flushing, rashes and itching triggered by Tecfidera have mostly stopped now. I still have the odd day when this happens, but it’s much milder. I haven’t yet spotted a link that would explain why it sometimes happens, but more often doesn’t. I have a blood test at the end of September to check liver and kidney function and once that’s cleared, there’s just possible hair loss to worry about!

Many thanks to family and friends for your continued support with all these ups and downs ?

What is this strange world in which we are now living? Nothing is as it was and it’s very unsettling.

This has been a really tough week for many of us and I hope you are managing ok and doing all you can to keep yourself and others safe.

Last Monday, I should have been flying to Moscow for HSCT. I’m so disappointed to not be having my treatment and the emotional shock of this change has been very difficult. For me and my family, everything has been building towards that day and that one aim, so it knocked us for six when it didn’t happen.

As we have moved though the week and the threat of CV19 has increased, and all the necessary restrictions have been put in place, I have become increasingly thankful to be at home and to be feeling relatively safe. The thought of trying to travel home from Russia in this situation really scares me … so I’m going to sit this out and see what happens when life gets better for us all.

I spent most of Monday and Tuesday in a state of emotional shock about this big change, with the rapidly evolving CV19 situation as the back drop. On Wednesday I had a telephone appointment with one of Professor Sharrack’s team in Sheffield. I have to say that this was the best neurology appointment I have ever had! He really took the time to ask me how I am, what has changed since my last appointment and how my symptoms are impacting on my life. He was also pleased to find that I was still here and not planning to go to Russia anytime soon. I’m not sure what my rights are to choose my own consultant, but I intend to find out and choose this one if I can.

The upshot of the appointment is that I should have had a brain and spinal cord MRI in January and no one seems to know why it didn’t happen. So, I am to be referred again and will have a further consultation when the findings are known. Obviously I have no idea when this scan might take place, but at least I’m still in the system somewhere! I was also informed that the hospital in Sheffield have suspended their HSCT for autoimmune diseases because of the risks presented by CV19.

There was another devastating blow this week when we realised that the Swan Brewery head shave and Bald Eagle beer launch event cannot go ahead. Jimmy and Gill have worked so hard for this and are now having to work doubly hard to protect their small brewery business from the current crisis.

If you are in the Leominster area and would like some good beer as an occasional isolation treat, check out their collection or drop off options here …

Swan Brewery

On Monday, I discovered that both Niamh and I are on the government list of vulnerable people – me because of my MS and Niamh because of her asthma.

I decided I need to “socially distance” and self- isolate as much as possible ..something I found very upsetting and depressing to begin with. On Wednesday, we made the decision that we should not be together. Niamh lives part of the week with me and part of the week with her boyfriend, Callum and from now on, will be living at Callum’s. It was incredibly upsetting for us both when she came home after work to collect a few things, blow kisses and say goodbye from a distance …but it was the right thing for us to do.

Yesterday Niamh dropped off a food parcel after work. I thought I’d feel upset and it was hard not to hug her, but it really did give me a boost to speak to her and to see her in the flesh.

On Thursday I went back to work. When I say “went” I didn’t actually go anywhere at all, but worked from home. All of my team have been working from home since Tuesday and both my employer and team manager have been amazing at ensuring everyone is safe and able to work. We have a work WhatsApp group and are keeping in constant touch with each other, which is great. I didn’t want to go to the office at all, so a colleague collected a few things and brought them to me and we even managed a short socially distanced chat, with me on the door step and her on the pavement! It’s good this is happening at a time when there is a break in the usual rainy weather! Thank you Jan and lovely to see you ?

On Wednesday evening, the government announced that schools in England would be closing to most pupils from Friday afternoon. It’s actually incorrect to say that schools are closed – most are, in fact, open and will be providing care for the children of key workers as well as those who may be vulnerable. I work with children who are in care and who automatically come under the vulnerable heading, so it’s been a hectic couple of days trying to ensure everything is in place for them as it should be. The task was made more difficult because of both the lateness and vagueness of government directions and the variety of ways in which these were being interpreted.

Most council staff who are able to work from home are now doing so and our IT systems weren’t designed for this level of remote demand, so there have been challenges, but we are doing our best.

All in all I have enjoyed being back at work. It has been good to have something different to focus on (other than on myself!) and to feel I am doing something useful. I am absolutely exhausted though!

I’m glad it’s now the weekend and plan to catch up with friends and family via Skype, messenger, Facebook, whatsapp, text and good old fashioned phone call. How would we have ever coped with this situation without technology and access to the online world?! I’ve even been invited to a virtual pub lock-in!

I also plan to make some lists of things to do whilst at home and create a bit of a timetable for myself. I definitely function best with a bit of structure and purpose in my life. In addition, I will be reviewing my food situation and having a stern word with myself … if I continue as I am, I may well avoid the virus but I am likely to become a very fat alcoholic, which I’d also like to avoid.

The government and NHS websites are being updated regularly with advice and guidance on what we should all be doing to protect ourselves and each other and I am also checking various MS/CV19 pages too …

NHS COVID-19 page

Coronavirus (COVID-19): what you need to do (Government page)

MS Society COVID-19 page

Professor Gavin Giavannoni’s MS and COVID-19 Microsite

So this is my life for now. Living and working in this little house on my own, with two crazy cats for company. I hope to keep in touch with the people who matter to me and I hope to get myself into some sort of routine that also includes time outdoors. I am dependent on others to do my shopping and bring me what I need …this doesn’t sit easily with me but I’m going to assume that no one will offer help unless they genuinely wish to provide it. There is an amazing local community group emerging where I live, offering all sorts of help, home deliveries etc. so I’ll be making use of that too. Most human beings are fantastic in crisis! (We won’t mention the virus deniers and panic buyers for now!)

Tag: homeworking

133 A few updates