Hallo everyone
I have been diagnosed for a year following a sudden episode of ON and in retrospect the usual range of something and nothing symptoms.
It appears my MS may be a ‘mild’ form based on my age and MRI results.
I would very much like to hear from anyone else in a similar position.
Been there - Done that.
But seriously, your MS will have its own ideas as to whether it is “mild”, or “aggressive”. There is NO normal.
Following an attack of Transverse Myelitis a year earlier, I was diagnosed just over a week before my 70th birthday.
At the time the only sign that anything was wrong was that I walked slower and needed to stop for a rest more often.
Three months before, I had been to a conference in Orlando, and two months before that, had been on a very hectic trip to the US that involved 6 flights, 5 states, 4 conference papers, 3 rental cars, and a whole lot of miles in 17 days.
Now, I need an FES and a 3-wheeled walker to get about at all, and needed a stairlift installed.
I offer two pieces of advice:
In short, plan for the worst and it may not be too bad at all. Assume that it will not be very bad, and you may be disappointed.
Geoff
Wise words, Most of us MS or no MS don’t make the most of what we have. Life circumstances can change in a heartbeat. Build a team of family / friends and professionals who will help you to make the most out of your circumstances today. Get today right and most other stuff falls into place.
Mick
Thanks both for your replies
I am conscious that a diagnosis of MS later in life means that many of the challenges facing younger people such as coping with work and child rearing do not apply.Most of my peer group are finding their capacities are deteriorating due to the ageing process alone.
But the shock of a diagnosis of such an unpredictable condition still applies.
Also I have found the response of some trusted friends puzzling,almost punitive but being honest,I do recall that when my husband told me that he had kidney cancer,which killed him three months later, and we were in our forties with young children,I too found it difficult to focus on him rather than my own anxieties,fears,and I can see now, unexpressed and unexpressible anger,so it is perhaps payback time.
And ,yes,I have been able to appreciate the good things each day,now being reminded that life is unpredictable,so something good,again I imagine more difficult for younger people.
Writing this,I presume such emotions are common when facing incapacity,I’m fortunate I haven’t had to face it on my own account before,a lonely furrow to plough.
Catherine
Hi Catherine
I don’t think it matters what age you are, it’s hard to cope with a diagnosis like MS. Also I don’t think it’s payback for you having very understandable fears when your husband had cancer. My goodness, you have been through a lot, so be gentle with yourself.
I have felt that “it’s payback” thing as well, but I can mostly rationalise it. My mum died with a brain tumour so I’d seen neurological conditions up close and I felt like maybe in some way I needed or deserved to have the first-hand experience, you know, like this would somehow restore balance to the universe! But I know my mum wouldn’t have wanted that, she’d want me to be well and getting on with my life.
It’s normal to be frightened when other people are ill. You had young kids when your husband was diagnosed so no wonder you had fears when you were about to be left with a bereavement and a whole lot of responsibility that you couldn’t just easily put on hold to let yourself recover. I think you must have been very brave to get through that time. You say your friends’ reaction to your diagnosis is puzzling, “almost punitive”, and I think you’ve sensitively made the connection with their fears and the ones you had when your husband had cancer. If they are having symptoms from normal ageing, they may be feel unconsciously threatened by your more serious condition, maybe because it raises unwelcome thoughts about ageing and physical illness more generally, or maybe because they feel like they just have to put up with relatively minor breakdowns of their bodies without much fanfare. There’s a frustrated need to mourn what’s lost and something more “dramatic” like MS might seem to them to offer more opportunity for recognition of physical losses. In fact, it often isn’t the case. I’ve found that my own peers in their 30s and 40s don’t really want to recognise what’s happening to my body either. This can be quite lonely, but when one friend had a stronger reaction I found that difficult too, and wanted to put the genie back in the bottle and just have everybody act like nothing was happening.
So I think it’s a peculiar paradox, where you need people to understand you’re going through something difficult, but you also want them to treat you as the same familiar you that you’ve always been. For friends and loved ones it’s quite hard to get the balance right. It’s quite a big adjustment I think for everyone. I’m totally freaking out if it helps!
Hoping it gets easier for you and for your friends to give you a bit more support at this time, because it’s ok to need some, at whatever age.
Thank you so much for this insightful and sensitive reply Spacemonkey
Throughout lifes travails I have always found that there is nothing to beat fellowship with others in the same boat and you have confirmed this view.
I dont know anyone else with MS,yet, and although I have had a relatively straightforward path,yes it is lonely and requires deep digging.As is my wont,Im often told I am too analytical, I have found making links with the past helpful.
And I couldnt help but be struck that the episode of ON which came out of the blue,although I had had minor numbness and tingling etc occurred very shortly after my younger child had told me that she was pregnant ,the older one also having children,after much difficulty,and this meant that I felt my ‘lifes work was done’.
I mentioned this 'life stage 'issue to the excellent MS nurse but she did not recognise this as a feature of the onset of MS.
Yet again,let me acknowledge that I imagine being diagnosed at an earlier stage in life and wrestling with childcare,work etc is more demanding,and ,oh dear,writing this,yes that is how it was for me in my forties,also confronting a terrifying and unusual adversary that had changed my life forever for the worse.
Psychobabble rules ok…
And all the best to you with your current freaking state,it is very impressive that you can give so much to others whilst in that horrible place.
Ending on a positive,I am now taking Sertraline,an SSRI ,and despite the usual,oh no I wont take medication,thats just for the weak and feeble etc it has had a very beneficial effect and helped me with the ‘live for today’ philosophy which we should all, and not just those of us in this club ,adopt of course.
Catherine
Hi Catherine, I completely agree about the importance of life-cycle stages. It does sort of make sense that our bodies sometimes hold on until we have those moments when a task is done or a stage completed. I held on recently to get a big project finished at work and when it was done I just fell to bits and had to get signed off work for 3 weeks. In your case because of what you had been through and your kids having lost a parent, I imagine that you have fought very hard to stay strong for them and maybe never had time to be ill before, weird as that might sound. I know we don’t actually get to choose the timing!
Anyway I hope you have time to look after yourself. It’s good to hear you’re finding ways to feel positive with your “live for today” philosophy. I can end on a positive note today as well, cos I am going on holiday tomorrow! I am looking forward to going for short walks, catching up on rest and eating lots of food that I haven’t had to cook or shop for!