Update: Exercise, Party and… Sleep

Hi all,

I thought that it was time for a quick update, just to let you all know what I have been up to, as I am aware that my blog and social media has been quite quiet. I feel like the last couple of weeks have been mega-busy, though it is probably because everything is in a bit of disarray at home! We’ve had lots to contend with; the dreaded DIY of a bathroom update, a birthday for my now 9-year-old and Year 6 SATs (tests that 11-year-olds have to take at school, for my overseas readers). So I apologise for being somewhat quiet! Do let me know how you are getting on in the comments below 🙂

A New Bathroom

I’m not particularly au fait with home improvements, but when the shower started leaking down to the kitchen ceiling below, my husband and I decided it was finally time to give our bathroom the much-needed update it has required since we moved in 7 years ago.  Cue him doing all the hard graft (tiling, painting) and me getting to choose the lovely accessories to try and get it ‘Pinterest-worthy’, all the while spending as little money as possible. As much as I am looking forward to the new space, I am not enjoying having to run the gauntlet every time I am walking around the house.  There seems to be stuff on every surface and all over the floor, so I have had my work cut out trying not to trip over my lead-like MS legs! However, the end is in sight, with only last minute touch-ups to the paint and blinds to be bought. We’ve gone for dark walls and lighter tiles and it is such an improvement on what was there before – lots of mouldy grout and shiny walls!

… to this!

Exercise

Something that I mentioned in my last HSCT update was the fact that I am really suffering from increased pain and spasticity, particularly in my legs and hips.  I’m hoping that this will be temporary and it is just a side effect from reduced movement when I was in isolation, but it is massively affecting my sleep and therefore my mood. I’m even struggling to get out of bed or off the sofa due to the pain. MS has affected me in many different ways in the past, but pain wasn’t one of them until now. I have been doing some exercises that my Mum – a retired physio – has shown me whilst I wait for an appointment with a Neuro physio (I wonder how long that will take?), which seems to help in the short term.  In addition, I have been referred by my GP for a ‘wellness’ programme, which entitles me to support from our local gym at a reduced price for a period of one year.  I used to be a member of the gym, but left after my MS progressed and I found that I couldn’t use the machines easily. This time around, I am hoping that I can make use of the water aerobics classes, build up my cardiovascular health using the hand pedal machine things (I’m sure that they have a proper name!), and tone myself up a bit.  I can but hope!

As part of my induction they did a health profile on me:

Not surprisingly, my muscles could be better but, I have to say, I am pretty pleased with having a metabolic age as 25! I was also able to walk for 8.5 minutes on the treadmill (albeit at 1/km per hour) and do some light weights.  So, watch this space. I am hoping to go about 2/3 times a week.  Even if it is just for 30mins, that is better than nothing and, as the health profile can track changes in my body, I will hopefully see improvements that will help me to keep going.

Birthdays

I remember writing a blog post a couple of years ago about hosting children’s birthday parties when you are a spoonie parent. Well, it is that time of year again and I have just survived my daughter’s 9th birthday party.  This year, we held it at a local 10-pin bowling club so that I didn’t need to worry about catering (food was provided) or entertainment.  It was really easy and the feedback from the kids invited was great.  Of course, in my fantasy non-multiple sclerosis life, I would have arranged a party in our local park with games and a picnic.  But having extra dodgy legs and perpetual tiredness means that I just wanted the party to be as easy with as possible with little prep and clearing up, so bowling did the trick. As much as I don’t particularly love hosting children’s birthday parties, I can see my kids (now aged 9 and 11), slowly slipping away into the ‘tweens’. I know that they won’t want parties for much longer, so I’m not going to grumble when they do!

Sleep

Sleep isn’t a new topic for me (it is one of my favourite things to do, after all), but it is something that I have been struggling with lately. The increased spasticity of my legs means that sleeping at night is really, really difficult.  I wake in pain several times a night and have tried to help myself by increasing my baclofen (under doctor’s orders) but it isn’t really making a difference. My hormones have been a bit funny since the chemotherapy I had as part of my HSCT, so I have also had to contend with random hot flushes at night… not conducive to a brilliant night’s sleep. So, I have been using my Calm meditation app and listening to sleep stories, as well as making sure that I read my book rather than scrolling on my phone at night. I use my Magnesium Body Butter to help with cramps and I have been trying to nap during the day to make up for my rubbish night sleeping – but it can be tricky to make sure that I don’t stay asleep for too long. This article from the MS Society has some great sleep strategies that I am going to try and stick to but I think that, ultimately, I need to try and alleviate my spasticity and pain. Fingers crossed I won’t have to wait too long to see the Neuro Physiotherapist.

***

And that is my mini update!  What an exciting life I lead, eh? To be honest, most of my time is still spent just resting and pottering about the house. I am using the excuse that I am still recovering from my treatment – apparently, it can take up to a year and even beyond, so I am not putting too much pressure on myself to do more.  Keep an eye out for my 4-month HSCT update, which I would like to do over the next few days.

Till next time