I’m just back from a mini-mini break, to Nottingham.
I tagged along with the Boss as he was taking his son back to Uni and what better way to ignore my looming Dissertation Deadline than to hitch a lift 150 miles away from my laptop?
I’d packed my little case, issued a stream of instructions to The Teenager (keep cat alive, lock door, don’t lose your key, etc) and had an hour to spare before I was to be picked up.
That awful, prickling, niggling sensation. The one where you can almost physically feel the shutters roll down, one by one. MS fatigue. Out of the blue. It smacked me on the head so hard I felt sick. I had to sleep. I couldn’t move, so dozed sitting upright with Jeremy Kyle on pause (just when I was getting to the paternity test bit). I managed to bank enough minutes to look semi-decent for the journey, although my hair was a bit wild and my eyes were drooping.
When we hit the M50, I fell asleep. We stopped for coffee half-way and I was too tired to eat more than a bite of my KFC. Back in the car. More sleep.
Nottingham, took student out for a burger, then back to his accommodation. This morning, after a long sleep and a four-shot coffee, I promptly fell asleep in the car again and pretty much slept til Wales.
What can I say? Nottingham seems nice. But I’m still, after five years, struggling to accept this tiredness as a symptom in its own right. My walking was all over the place, I can take that. I can also accept the need to grasp my coffee cup extra tightly. I will probably have to get my boots re-soled again after all the tripping. But sleep? That’s the tricky one. It just seems such a waste.
As I drifted off outside Worcester, I tried to argue with my exhausted brain. Sleep would make me feel better. It’s MS-normal. It’s ok. But I’m not convincing myself.
I guess it’s the randomness of it – like all the other MS symptoms – but this one is so absolute. You completely remove yourself from life and that scares me. If you have foot-drop, you can still get out, albeit in a more comical fashion. If you drop a cup or bang around in the kitchen, you can make a joke out of it. But sleep is an alternate state and there’s nothing I can do about it.
For someone who has to stay in control, bring up a child, run a house and all that goes with it, to have to absent yourself from life and, in effect, become unconscious against your will, that’s a lot to take on board.
Fatigue is more than being tired.For me just as bad as the neuropathic pain.And it is constant.I’m always exhausted and wake up as tired as I go to sleep.Please don’t minimise it as a symptom.If you don’t take it seriously, the rest of us MS’rs have it even harder with people without, and it’s a very hard stuggle with the DWP as it is.Hope you feel better soon.
You are absolutely right. And in no way would I want to minimise it – I really want to show people how horrifying it can be, i.e. having to be unconscious, against your will.
It’s me who struggles with it, especially being the only parent. I guess I refuse to give it credence when I really should. It’s just, when I’m asleep, there’s no one else to take over?
Even four years down the line, the impact is frightening and absolutely, the DWP should be fully aware of this. I want it to be renamed Clinical Fatigue. And yes, it’s the same as neuropathic pain, probably worse as there’s no treatment. Well, I tried Amantadine but the nightmares it gave me were psychologically damaging so I had to stop. What’s the solution?
Hiya, I didn’t mean to criticise.We just tend to minimise naturally.MS can be scary being so unpredictable.I’m not a lone parent so can’t imagine how that feels.But I am often on my own with my boys (13.5 and 14).Husband works long hours.
I have lost years to fatigue, sleep and being in my bed instead of being able to do things with them.The guilt is overwhelming but they always tell me that I am a great mum.Amantadine did nothing for me and Modafonil aggravated my migraines.It’s also a very expensive drug so is rarely offered.
There is a good, closed, facebook help group here in Scotland, very down to earth.Jonathan McLeod runs it (MS Scotland Support Group).We’re all a bit bonkers.There are people on it from all over the place.Have a look.People sometimes just want to ask a question, vent, see if anyone else has a similar symptom.
I didn’t think you were criticising for one minute – it’s fantastic to hear different sides and I changed a little of the wording on my original post. That’s the beauty of blogging and hearing back from you all; it knocks me in to shape!
You are so right, we really do minimise MS and try to shrink it down to fit our lives. Only problem is, it’s a stubborn beast and refuses to budge. That’s the problem I have at the moment 🙁
As for the guilt, there’s not a single day goes by I don’t regret not taking The Teenager to the seaside more, out on day trips, on the train to other cities. It will always live with me and that’s what agencies like the DWP will never understand. Maybe we should use ‘unconscious’ instead of sleeping? It’s real, it’s true and they may just ‘get’ that word?
The Facebook group sounds fab – I really must get back on Facebook. Good to hear I’m not the only one who Amantadine didn’t work for!
I think you’d like the facebook group.It’s a lifeline to some people, particularly those who have no support or contact/understanding from family.There is also an ESA/DWP help group on facebook which I am a member of.I read about one man (not MS) who had drips and tubes coming out of him and the assessor asked him if he could go to work wearing a nappy.What sort of country are we living in? x
That is truly disgraceful. And as for all of us with MS being reviewed for PIP, what’s the point? Do the DWP know something we don’t about MS being suddenly curable??
I’m on a fair few campaign and research groups and as long as I am able, I will fight every step of the way, even if my fat face gets splashed around the media, i.e. Carmarthen Taxi Row (very, very bad photo – I was really ill, in my defence!)
And as for being sacked for having MS, as I was, well, it still continues to this day. The fight continues!
I read your post on that.It’s happened to people on our facebook group too.Awful.I’m currently dreading the brown envelope coming back from. PiP having been sent a letter in December that my DLA was ending.It’s a 40 page form.I needed help to complete it.Dreading being assessed.Keep your spirits up. You’re doing well and your son loves you x
Thank you! Good luck with the assessment and don’t forget, almost half of appeals are successful 🙂 It’s a horrible thing to have to go through – don’t these people realise stress is bad for MS?? And can bring on a relapse? Maybe someone should sue them for it.
I’m sorry my home town couldn’t rouse you, although to be fair it had an uncannily similar effect on me the last time I went there. The last true fatigue punch came on Wednesday when I had to go to bad drivers’ school (jumping a red light). I absolutely had to stay awake so I didn’t get points on my licence. I have no idea how I did it, but I was alive at the end. As I’m relapsing anyway and can’t see so I’m not driving the course was largely an academic exercise, but when it was over the need to crash (not that way) in the car was overwhelming. Today I got up about an hour ago and I’m quite ready to go back to bed now. Not as bad as Wednesday but bad enough. I offer empathy as not much else is any use.
Nottingham did seem lovely and we had a fab meal at Annie’s Burgers 🙂
I had to go to one of those courses as well (only a couple of miles over the limit on an empty road) and I feel for you. I struggled to stay awake too.
Really sorry to hear about your relapse and hope you feel better very soon.
Totally random reply that not really related to the article, I actually found your website from the link on your twitter thingy and i only found that by accident. Well I did say it was a bit random, oh, did I mention I think you look lush (assuming the twitter pic is you !)
It’s definitely me, thank you!
Glad you found me, however randomly 😉