Ever heard:
- Oh, you’re so strong, I really don’t know how I’d cope if I were you
- You’re strong … I just know you can do this
- You’re never given more in life than you can cope with … you’re so capable, you’ll do it
All lovely, life-affirming sentiments, intended to bolster us up and make us proud that we are somehow ‘battling’ MS.
Well, here’s the secret:
There is no battle.
All this military talk, of battles and fighting. Did you ask for this? Probably not. So, there is no battle and no fight. Most battles/fights are fought with both sides having some kind of previous information, i.e. ‘There will be a fight tomorrow, be there or else, and bring your flags and biggest blokes, ta. P.s. your trench looks great’.
MS does not fight. It invades, when you least expect it. It inveigles itself right inside your life before you even have time to draw breath. So where is the battle in that? It’s like a tug of war with the winning team walking casually away pulling the rope while you’re still in the pub having a Pimm’s and catching up on the darts or Putin. Or something.
Going through the MS diagnostic process, I heard all of this. I was pushed into a position of ‘Fighter’. Quite suddenly. I wasn’t coming to terms with an incurable disease, I had to fight it. Erm, how exactly?
Now, on the cusp of my fifth anniversary of being diagnosed with MS, I realise I have never been a fighter and never will be. I run away at the first sign of trouble, which is probably why I held an extended MS pity-party for a couple of years, wailing ‘It’s not fair‘ to anyone kind enough to listen.
We all deal with MS in our own, unique way. It is, by it’s very nature, a unique illness and no two people with MS are the same. It is impossible to fight an illness which hijacks your immune system; we can merely accommodate the symptoms with medication.
According to so-called internet experts, my MS is due to familial connections, growing up in Scotland, having Nordic genetics, drinking Diet Coke, chewing gum, being exposed to life.
All well and good – a bit like closing the door when the horse has bolted?
Believe me, if you’re fairly newly-diagnosed, please don’t feel under pressure to ‘fight’. Allow yourself time; time to grieve, time to feel sorry for yourself and most importantly, time to realise that MS just … happens. It is not your fault and you do not have to become a flag-bearer.
Look after yourself. I think all of us living with MS could do well to remember this?
You are so right, none of us signed up for this battle of a lifetime.
My own personal “fighting” stance is to stick my head in the sand and just take each day as it comes.
My family want me to “face up” & “get prepared” for what the future could hold for me. Obviously my crystal ball isn’t working because I don’t have a clue what my MS future holds.
I have been diagnosed for nearly 2 years and if I’m honest I still haven’t come to terms with what it may mean for me and I actually don’t want to.
Keep smiling ☺ xXx
I’m the same, I take each day as it comes, until I spend some nights awake, worrying about the future!
I don’t want to fight MS, I just want to adapt to living with it.
x
p.s. my crystal ball isn’t working either 🙂
Hi, it seems like a few of my twitter friends are all going through a relapse, a friend who lives near me as well. She is on gilenya, she’s not happy with it and hoping to try Daclizumab if and when.
This blog reminded Vicki saying the same, get on with life, never go to bed angry, and wake with a smile to a new day whatever it brings.
Chin up my lovely friend, when home alone, scream shout and curse, then have a favourite tipple or 2.
I’ve written a couple of blogs then deleted them recently (in an unhappy place) so I read what others have to say.
I look forward to many more of yours. I see there’s a ski centre ski4All Wales on fb, have a go.
Thinking of all my MS friends ?
Hello there,
Sounds like Vicki had the right idea! Waking up with a smile is the best way to live.
Sorry to hear you’re not in a good place at the moment and I really hope things get better for you very soon.
Will have a look into the ski place! Watch this space …
X
So well put( as usual) … I definitely try and look after myself a bit more now as I get older. Wow five years diagnosed… same as me! Was 45! I have read on some MS sites that where you are 5 yrs post diagnosis is 75% of how bad you are going to be. I hope that’s true? Do u ever worry about your son getting ms? I have 2 girls 18 and 20 and my biggest fear is them having it?
I really, really hope that’s true! I could just about cope with that.
I do worry about him getting it, but I console myself with the thought that we could get an early diagnosis and he could have access to one of the new treatments. And fingers crossed, there is a cure in the not too distant future 🙂
x
Yeh that’s what I hope too. New treatments hopefully will save them if the worst happens! Wish I was more of a “glass half full” kinda girl. I always fear the worst? Anyway off to get my MRI scan results ??
Fingers crossed it’s good news 🙂
My MS nurse called me this morning and I have to attend the rapid access clinic tomorrow morning. I saw one of the nurses last week for a booked appointment and mentioned my relapse, so they want to look into it and send me for an MRI 🙁
x
Hope your apt goes well tomorrow and you get scanned quickly? My scan showed no new lesions or active ones so on paper it’s as good as it could be! Couldn’t believe there was no change given how crap
I’ve felt during Feb and Mar. Apparently old lesions flaring up … so I was sent on my way and told I’d be seen again in November …so I’m drinking wine to celebrate even tho I said I wouldnt drink til weekend ? Good luck 2m x
That’s fantastic news!!!!! I’m so chuffed for you 🙂 Always such a relief to find out there’s no new lesions.
Have a fabulous Easter weekend!
x
Thanks, you too☺️x
🙂
x
Brilliant news! Am so chuffed for you…you’ll have a great weekend…x
Have a great weekend to everyone!
x
I wish I could be me, but I am no longer the happy sociable person I used to be. I used to smile a lot particularly when talking to someone, but now I find it really easy to have and keep a straight face. I know I’m old, but feel that in the last few years I have aged an extra 20 years. With my balance being nil and with the fatigue I am not as mobile as I used to be so therefore weight has piled on. Nor can I put make-up on, even a touch of mascara, which I always used to wear.
What I can’t understand is why do I unburden myself on your blog? You have enough with your own problems with the MS. Perhaps you or the blog make me feel that having a moan is ok.
How’s your relapse? Has it calmed down yet?
I’m really glad you can unburden yourself here, I feel very privileged you feel able to. It’s a safe space 🙂
The relapse is ebbing away little by little I think. I’m definitely a little more motivated than I was recently, although my hands are still playing up badly.
I’m sorry to hear what MS is doing to you. My MS weight gain (medication/thyroid from Campath/hours on the sofa) has been one of the worst things for me. I still don’t recognise who I’ve become, weight-wise. I hate it and thank god my work uniform consists of baggy work trousers and a t shirt. The joy of working on building sites. But when I dress in normal clothes, I daren’t look in the mirror 🙁
x
Joan I’m totally the same. More open on this blog than I am anywhere else. Isn’t it strange ? .. strange in a good way that is. Keep pedalling ☺️X
This is so great to hear – I’ve always wanted to have an open forum where anything, absolutely anything, can be discussed 🙂
x
Great post. I also don’t want to get up every morning and fight my way through the day. I have a family and a job and I want to simply get on with my life as a working mum being harassed by my teenagers!
I do take the stick my head in the sand approach a bit, nearly 6 years after diagnosis I’m sure I’m still in some dorm of denial. I am learning,however, how to make this life work and not feel the need to explain and justify myself when I’m exhausted or in pain or having days where my brain just want quite switch on. Because thats all just part of me. Xx
Hear hear!! I always think how strange it is when healthy people urge us to fight. Why? Some things you just can’t fight against, you simply want to get on with life, as you say.
I also think it’s quite distasteful when people say, ‘oh, she lost her fight against cancer/MS/whatever’, like it’s somehow that person’s fault.
It would be great if we lived in a world where having MS (or any other illness), is seen as part of someone. As in, we live with MS, we’re not fighting MS. We’re just people trying to get along like everyone else!
x
…just totally agree…why is there such an emphasis on fighting…where has that come from?…and as you say ‘losing’ the ‘brave’ battle. I get upset on my own behalf but also for all the lovely people who have ‘lost’ battles with illnesses. Losers they are not in any respect. So glad you’ve brought this up…and to see that other people feel similarly to myself…x
I’m glad too, to know that I’m not alone in finding it distasteful. News report after news report of people ‘losing battles’. As if they had a choice!
x
I gave up fighting bloody MS years ago. It has progressed and it is now a part of my life, it is me and it always will be a part of me. I do hate the part that means it takes an hour to get dressed, I cannot carry anything and I cannot walk.
On the other hand MS has given me my website, Toastmasters, a renewed interest in photograhy and believe it or not a better quality of life.
You are right. I might mourn what could have been. I don’t fight it instead I adopt a positive attitude and quite simply I succeed in living with it. Is the phrase carpe diem appropiate in this case
I think that’s what it’s all about – trying to live positively with MS. Carpe diem indeed!!
x
Hallo, I don’t know your name. I just wondered how you are as you haven’t posted for a while and I know you’re going through a relapse.
Joan (Wales)
Hello!
I’m still struggling quite a bit so haven’t had anything interesting to write about 🙂
Fingers crossed it’ll pass soon and I’ll be back to my usual self again. Thank you for your comment!
Barbara x
I was wondering too as you had been quiet. Obviously your online audience are quite demanding lol!! Well, Joan and I anyway? Seriously though hope it passes. Kinda thought you were on the mend before Easter but us obviously taking its time! Fingers crossed for you. Ax
You guys are so lovely!!
I really did think I was totally over the relapse but the last ten days have been hard, so I’ve been working from home a bit more (in my pyjamas – bliss!).
I’m not as bad as I was but it’s taken its toll I think – either that or relapses are getting worse as I’m getting older!
X
Feel better really soon …look after yourself x
Thank you!
x
Sorry to hear you’ve had a stinker. The last I read was that you thought the relapse was on the way out so I was concerned when you hadn’t posted, otherwise I wouldn’t have taken you away from getter ‘better’.
Take care and take your time. X
Joan (Waes)
It’s been a very odd relapse and a lot longer than I usually have. I had a couple of good days and thought it was over then ‘blam’ it all seemed to come back again. I think i’m just going to take it day by day now. Here’s hoping!
x
Hope you feel better very soon…at least your scan was positive so hopefully it’s just time and you’ll turn a corner soon. Spoil yourself as much as you can…thinking of you…x
Still waiting for a scan, but definitely hoping to turn a corner. It’s getting a bit ridiculous now – I feel like I’m waiting for the year to start!!
x
So sorry…I must have got you mixed up with someone else…MS brain…I thought you had the scan…what a plonker (me not you!!!)…hopefully it will be okay and hope you turn that corner very soon…
It was Annie who had the scan – further up in the comments. I have terrible MS brain at the moment too!!
x