I am raging against the spoons!
Or at least the idea of having to ration my energy and activity to enable me to function at a steady level. Today is my third day of taking to my bed after the school run because even spending that “spoonworth” of energy means I need to have another nap. My pins and needles are back, my vision is blurry, my cognition is reduced and the word finding difficulties are comical (to everyone but me.) I can’t rouse myself to do the most basic of tasks and feel like I am moving through treacle just putting one foot in front of another.
In other words it feels like I am relapsing, but I don’t think that’s what it is. I’m simply burnt out because I STILL (four years post diagnosis) try to live at the intensity I did before. Last week I did two consecutive days at theme parks followed by a seventy hour working week (including four night shifts) PLUS a Little Mix concert (too much thrusting, not by me) and a meal out with friends. “Work hard and play hard” and all that. Except my body no longer wants to do anything “hard.” It would like to play only quietly and is not really sure it can cope with much work at all. I have my dream job and at the moment I am simply trying to survive until the end of each shift. I can’t really hold a decent conversation with anyone because I forget the words for things half way through sentences (or I say the wrong word and people think I’ve gone a bit barmy. The only people who don’t bat an eyelid at this are my children who are experts at interpreting “pass me that long stick” and knowing I mean the cucumber!)
So I gave in to self pity. I made a list of annoyances and dwelt on them. I posted an indulgent rant on Facebook. I had a little cry. I WANT IT ALL. FOOT STAMP, FOOT STAMP.
And then I came to my senses. And once again (I am like a stuck record) I realised how incredibly lucky I am, not only to have what I have but also to be not facing what others have to face. Quite apart from those in the wider world facing horror, hunger and hardship I have friends who face daily battles. They have poorly children or are sick themselves. They face huge uncertainty about the future for themselves and their families and they do it with dignity and stoicism. I am relatively well. The MRI I mentioned in the last post showed no further lesions. My MS is not deteriorating despite what I feel this week. And people are consistently lovely to me – warm, kind, encouraging, patient. Not one of you had pointed out the obvious – that I need to just take that final step in the cycle of grief and ACCEPT that things are now different. Life needs to be slower. Workloads need to be reduced. I need to be mindful of those bloody spoons.
So, I am going back to sleep. And when I wake up I will send the email asking for an adjustment to my working hours. And then we’ll see what life brings next…
In lieu of another post (which I will write soon to tell you that I did a half-marathon!) there is this.
Yesterday I forgot the word for seat belt. The fear of the disease doesn’t go but the determination to stave it off goes on!
Regular readers of these witterings will know that, once I started to come to terms with my diagnosis, the lasting sadness has been my inability to dance. I love dancing. From making up routines with my sister and school friends to pogo-ing in mosh pits in the early 1990s, from “salsasise” at my local leisure centre to energetic daft dancing with Mr C in indie nightclubs, from a youth dancing on bars and tables to a 30-odd year old dancing in the kitchen with my babies I have always loved dancing. And when I became unwell I couldn’t really do it anymore. My balance is off and my legs aren’t strong. Pins and needles and vertigo are the enemy of stuff-strutting. I have also been known to fall over if I try and that is a bit disconcerting for the children.
But this summer I have danced a little. I have danced at my aunt’s marriage blessing, I have danced with the tween, and, on Saturday, I danced at a charity ball. I have never been to a ball before but I squeezed into a dress, donned a new pair of Converse, drank a little too much cider and danced … a lot. I got home in the early hours and publicly raved about how wonderful I felt and how grateful I am to the Copaxone for “fixing me.”
And I am so grateful. But I’m not fixed. Since the weekend my legs have regressed to the state they were in when I bought my stick and all l want to do is sleep. I am a bit gutted which is probably a bit ridiculous. If this is as bad as it gets for now then it’s a manageable thing. I just need to moderate myself (never my strong point!) and remind myself of all the energy-management skills the MS nurses have taught me. And my resistance to this is yet another mini hurdle on this long road to full acceptance of what is happening to me.
And another mini hurdle is trying to find the balance between maintaining a normal life and accepting the help that is offered to me as a person with occasional disability. The public face of this is the use of my blue badge. I use my blue badge at work to park in the area closest to work. It don’t use “disabled” spaces but I do display my badge to be able to park there as part of the hospital policy. And when I do I feel people looking and judging. MS is one of a group of disorders that are sometimes called “invisible illnesses.” If you look online/on Facebook you will see a bounty of messages of frustration from people whose difficulties are not recognised because they don’t “look ill.” I am not the only person who has had people tell them they are “lucky” to have a blue badge. People wish for greater recognition of their symptoms and struggles from colleagues, acquaintances and wider society. And while I empathise it’s not a wish I share. I would quite like to keep my symptoms quiet, especially in this new job, or around my children (and when I told I am lucky I feel a flash of anger at the insensitivity of telling a person with a progressive disease how lucky they are!). But the point of this blog is to talk about how, with this luck, and support, and good medication, it is possible to keep living a full life with these symptoms and so reduce the fear felt by people at first diagnosis. And that you may have periods of time when you can’t do things but that does not inevitably mean you will NEVER do them again.
This Friday sees the start of the best thing about autumn and winter for this family – Strictly time. And so, with the appropriate level of cheesiness and with dancing shoes that are sequinned Converse rather than ruby red high heels I exhort everyone to “keep dancing” even if they have to do it sitting down.
Waving hello to the world of blogging. For a while now people have been suggesting that I start a blog about my recent experiences and I have been resisting a little – isn’t blogging a little self indulgent? Why would I assume anyone would want to read what I say? But then a friend told me that what I have to say might be of help to people who are going through a similar process so here I am. As it says above I wear many hats – mother, medical student, wife, teacher, daughter, friend, sister, aspiring domestic goddess – and for the past couple of years I have been grappling with an unwelcome new accessory – a diagnosis of Multiple Sclerosis. This blog will explore the process of becoming ill and being diagnosed and will also explore how life goes on and the other hats that are still worn. I can’t promise it will be ground-breaking, I can’t promise that it will always be about MS, I can’t even promise it will be interesting, but my hope is that it might give people an insight into living a life with MS and to that end I hope it may be helpful.