I think I’ve finally come to terms with having MS in my life.
It’s been a long grieving process, a period of mourning what I have lost and what will never be.
But through this grief, I’m now more aware of what is good in my life, and I’ve discovered previously-untapped inner strength. So how well did I manage the classic five stages of grief?
Denial – This. Cannot. Be. Happening. I spent a long time with this thought, lying awake night after night, gripped by an unfathomable darkness, terrified of stepping into the unknown. It was an unreal situation and I blundered through it, denial far easier than facing up to very real fears.
Anger – I had this in bucketloads, plus an unhealthy dollop of self-pity. I was angry beyond belief. Just when my life was opening up again and long-awaited opportunities were within my reach, they were going to be snatched away? Seriously?
Bargaining – I didn’t really spend any time at this stage. I knew deep down that there would be no bargaining. Rather than try to exercise more or incorporate a healthier diet in an attempt to avoid the inevitable, I veered off in the opposite direction, thinking, ‘what does it matter, the damage is already done’. I self-medicated with chocolate, wine and comfort food.
Depression – This was the longest, most soul-destroying stage. I withdrew from the world, helped along by my symptoms speeding up the process. Home became my sanctuary and my prison in equal measure. Life was interminably bleak, the days long and dark, the nights longer. And darker.
Acceptance – After the awful depression, I had a choice. Either to go under or create a new way of living. I was fed up waking up every day under a cloud of misery. Rather than focus on what was lost, I looked at what I could do. What had this whole process taught me? After facing a vortex of fear and terror, the only way to look was up. The alternative was unthinkable.
Grieving allowed me to survive this change in my life and come out more positive and stronger within myself. Change comes in many guises, mine just happened to be MS. It shook my life to its foundations, but the resulting re-building is more secure and solid than before.
And the best thing? I had overwhelming support support from you, through this blog. Thank you.
It may sound daft but do you think there is such a thing as the anniversary blues ? In a couple of weeks I will celebrate ???? My first year with MS, my attitude from day one has always been you’ve got it can’t change it get on with it but for the past few days I’ve started the it’s not fair thoughts
I definitely think there are anniversary blues. On my first anniversary in May I had an awful time. Truly dreadful.
You’ve just got to give yourself space and time. Grieving can be positive, better than keeping it all bottled up.
And with something like MS, all of us may grieve more than once, if our circumstances change again.
You’re right, MS isn’t fair. Thinking of you – there’s a lot of support out there.
X
Once again…a fab piece of writing. The best. Well done for your openness and honesty.
Take care of your good self.
Jenny x
Thank you so much!
It’s good to be open about it as so many of us go through this.
And without the incredible support I’ve had from people through blogging and Twitter, I don’t know where I would have been.
X
I really needed your post today, thank you xx
I’m not giving myself enough time to go through these stages which is only making things worse. My right eye is blurred this morning so I’m worried my left will join in under the strain! I’ve told myself this is now my normal and these things will happen.
I’ve got a long way to go and your blog has been a rock for me 🙂
Sam xx
Hey there Sam,
I’ve been thinking about you.
Please, please give yourself time to adjust. It won’t happen overnight, but every day you’ll get that little bit stronger.
I’ve been facing up to this for over two years now and it’s only very recently I’ve felt that I’m kind of through it. That’s a long time.
There’s no right way to mourn, but try not to beat yourself up. I’m always around and I’m a good listener!
X
For any skeptics out there, I can tell you: the bargaining phase WORKS! As a hypochondriac, I’ve made tons of bargains, and the fatal diseases I frequently think I have ALWAYS turn out to be non-fatal (well, so far, anyway)! So that’s proof positive that my many bargains (donate to charity, start going to church, be a Good Person all of the time, etc., etc., etc.) have worked…in spite of my almost always failing to keep my end of the bargain once I turn out to be okay, lol.
Hiya!
I was hoping you’d comment on the bargaining phase!! Honestly, it didn’t work for me, but I know exactly where you’re coming from.
I did once try not to walk on cracks in the pavement, but foot drop soon put a stop to that, lol.
X
Spot on as usual. Taking each day as it comes is the best way. Accept the down days ( gin still helps
Thank you m’dear!
Agree with you – one day at a time is best. In general, I’m much better. But still get days when I go through the whole five stages gamut again. It will come and go.
And, gin definitely helps. LOVE gin. Especially Bombay Sapphire, thanks to my lovely boss.
x
Re anniversary blues. I was definitely going to have a party for my 10th anniversary ….. But the day came and went without me remembering – which might just be the MS (ha!) but I like to think its that I don’t dwell on it every day and have therefore reached the acceptance phase. Until the next relapse anyway.
Know what you mean. ‘Funnily’ enough, just after I published this post yesterday, I had the most awful MS day. Still not right after 10 hours sleep. MS certainly seems to have a fine sense of humour!
x
i didnt go threw a denial stage, had my suspicions about what was wrong, so was more releaved when the docs figured out what was wrong, could then try to treat it. i just really wanted to know why my limbs were numb, and after a quick cry in the ward room i was fine.
did go threw depression when my hands went completely numb since i panicked and thought i would never be able to draw again, also chopped off my long hair since i couldnt brush it. now i miss the long hair :p and like you, chocolate was my best friend :p
another great post 🙂
thank you
That must have been so hard to cut your hair off :-(. Much worse than having to give away heeled shoes.
As for chocolate, it will always be my lifelong friend, sigh. Just a shame it likes me so much to, that it clings to my hips and won’t let go, lol.
x
growing it back now, my hair grows fast but it was past my hips when i cut it so going to take awhile to grow back :p
Wow, that’s long! I’ve got enough for a small (tiny) ponytail. Any longer and it just splits. Never been the same since the Campath treatment, but small price to pay for so many huge benefits.
x
it is a small price to pay for the benefits! i love my hair, (one of my only vanities),but I would go bald if it meant a cure, or decrease in symptoms. there is always a wig or hats :p
Absolutely.
I’m still musing over this post, considering what happened yesterday. lol. Worst MS symptoms in over a year, but this time I’m not grieving, I just felt horrendously guilty at having to go to bed so early, leaving my son awake. meh.
X
Once again a fantastic piece of writing true to your heart and what you have been through. I do find your posts really helpful. I keep jumping around through the stages of grief. I seem to get as far as the bargaining stage …. only just … and then bounce back to the denial stage and starting all over again. I guess that’s only normal and it really helps to know that you can finally get to a stage where you do accept. Hopefully that will happen once I escape from limbo land 🙂 xx
Thank you Angela!
It’s not been easy, that’s for sure. The main thing is not to put yourself under pressure to get through the stages quickly. Some we miss (like me) and others we do in a different order. Everyone is different – a bit like MS. I still get really bad down days, but then I think most people do no matter what their circumstances. But I think the whole grieving thing is thankfully behind me. For now!
X
I don’t seem to have gone through any specific stages, they all seemed to muddle together and hit me at strange times.
Ignorance seems to be my main one…if I ignore “IT” (“IT” being MS), “IT” was never there or will go away. I do have days where depression tries to grab hold of me but this is where my “refusal” stage kicks in…I refuse to let it drag me down but unfortunately sometimes it wins and can take my breath away. I do however allow these self wallow days as I feel they are good for me, oh and the company of my friend chocolate is a great help. That is until I get depressed over how much it has stuck to my rear end!
“Guilt” is another stage…I feel guilty over the fact that I am aware that compared to many my symptoms are not so bad (I use the comparison as to me having a cold versus the flu that many have)and I really should not be feeling sorry for myself. But then I look at a body that I no longer recognise, that doesnt work the same(does very random things at times)and that I am single…the self pity kicks in then; who would want someone like me. “Anger” then at me being so stupid an dI tell myself to get a grip and that my life on the whole is good.
All these comflicting emotions whilst all the time I put a huge smile on my face and pretend to my nearest and dearest, and colleagues, that I am fine.
No wonder I am exhausted! lol. How are we not chocoholics with drinking problems….Jack Daniels is my tipple of choice.
Reading this back….my god what a rant! Apologies but I blame it on the fact that it is 2am and I have quiet moment at work.
Hi Alison,
A really interesting comment and you bring up something a lot of us with MS seem to struggle with, i.e. the guilt that our MS is not as bad as other people’s. Stop right there! That’s the last thing you need to be feeling on top of everything else!
If MS is affecting you, even in a ‘small’ way, then it’s affecting you, so try not to feel guilty. Easier said than done though.
I loved your comment about us being chocoholics with drinking problems – great idea for a blog post!!
And please feel free to come here any time to rant. That’s what I’m here for!
X