I am very aware that I have been extremely quiet of late – a combination of holiday + kids off school + busy weekends + returning to work has left a very exhausted Jen! Today is the first day I have been able to have some ‘me time’ in a long while (the kids are at activity club, much to their annoyance!).
I returned to work last week, initially just doing 1 full day. This week and the next few weeks look like:
- Week 2 (this week): 12.5 hours (over 2 days)
- Week 3: 15 hours (over 2 days)
- Week 4: 22.5 hours (over 3 days)
- Weeks 5&6: 15 hours each week (each week working 2 days)
I usually work 22.5 hours over three days of work. Occupational Health recommended a phased return to work, only doing a maximum of 50% over the first couple of weeks; I then need to use my own annual leave to build up to 100% work. I figure that I am going to need those extra days off in weeks 5&6 and, as a bonus, we are going to Centre Parcs for a long weekend, sans kids, to just chill out, read books and rest. I can’t wait.
I’ll update a bit more about work when I have done a few more weeks, but let’s just say that that it has taken a lot out of me so far, I feel like I need to get my brain back into ‘switched on’ mode, and that is happening very slowly! Getting up at 6:30am is so, so difficult and just the need to be organised around making sure my bag is sorted and my packed lunch is prepared is draining. But I said that I would give it a shot and that’s what I will do.
I’ve been to Sheffield twice this week, initially to watch our little dolphin son compete in a swim meet on Saturday and to visit friends who very nicely let us crash at their house for the night. I also went yesterday to see a new Neurologist (I normally go elsewhere) after I asked for a second opinion about my MS.
Many regular readers will know that I have had MS for a looooooong time – first relapse when I was 13, diagnosed aged 15 and I am now, ahem, shall we say late, late thirties. I have lived with MS for over 25 years. I was initially diagnosed with Relapsing-Remitting MS (RRMS), then Benign MS. Please see below for pictures of what these may ‘look’ like, in regards to relapses (periods of distinct attacks), taken from The MS Trust.
Although I had a few relapses in the 2-3 years after being diagnosed (as in RRMS), I then had long periods without anything at all, sometimes up to eight years, hence being ‘down-graded’ to Benign MS.
Call it laziness or sticking my head in the sand, but as soon as I heard I was benign, I almost forgot that I had MS. I didn’t feel like I had MS, so I didn’t, right? Well, I was wrong. Unknown to me the damage can still be happening in your brain even if you have no perceivable symptoms, as I first noticed six years ago when my legs started dragging, even without relapses. Add in crushing fatigue, word-finding problems, progressing from using no mobility aids to one crutch, then two, then a scooter… I knew that I had moved onto Secondary Progressive MS (SPMS). Trying to get my Neuro to admit to it, however, has been a struggle. I knew something had changed and I just wanted to be treated as someone who knows their body best… so I went to Sheffield for a second opinion and, lo-and-behold, the Neuro there completely agreed with me. For people who don’t know much about MS, SPMS is basically when your body stops have relapses (often has none at all – I haven’t had a relapse in 12 years) but disability creeps up on you. Like all MS stages, the full extent of how much a person may progress, is unknown.
So, I guess it isn’t anything surprising… but it is still a lot to take in. I am trying to stop myself from being Google happy and searching, ‘how bad can SPMS get?’ I suppose I just need to try and keep doing what I have been trying to do, making sure I rest and making the most of the time I spend with my loved ones. I certainly don’t feel as guilty about potentially not being able to continue with work for much longer… I have done bloody well to get this far and my priorities are absolutely my kids and husband, so that is where I would like to concentrate the energy that I do have.
Is anyone else in that limbo between RRMS and SPMS like I was? I’d like to say that it is a relief to finally be given a ‘label’ but it isn’t really. Wishing everyone all the best until next time.