Jacqueline
Forum Replies Created
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Jessy, all I know is that these occurrences creep up on us and we rarely take any notice of our first signs, nor have reason to piece them together, we just look back on remembering them…The final diagnosing can take quite some time, once our local GP’s rule this out and then that out, as it did for me, well that was until I was taken seriously and sent off to have my first, then second MRI cervical – thoracic spine and brain scan, the second verified after having Gadolinium…
Strange as it may sound but, the day they put a name to it, is a weight off our mind because only then can we stop trying to describe what is happening to us, and for once, we can actually move forwards..
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My first thought was, OK I have MS, so I shall join everything MS, such as Therapy Centres, MS Social monthly gatherings, whether right or wrong…But now I ask myself, OK Jackie, so you have MS, but it shouldn’t stop you from non MS gatherings- hobbies etc, life doesn’t need to evolve around ” our own people…”guess we can choose to either mix with our ” own kind ” or get on with life as if ” normal…” I have met two people who live on our site who have MS, and neither want to talk about MS, nor be a part of the MS ” world, guess its a personal choice, by just getting on with their lives the way they choose and living life there own way…
My mind is telling me to push MS to the back of my mind and just get on with life, on the other hand I am also needing to be amongst ” my own people ” if only for the entertainment purposes for that short while, it is something to look forwards to, just the laughter that for that short period we-I can forget that we have MS, laughter and fun is very Important…
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Hard to say really…Strange things I remember was once getting out of the car as a passenger, as I placed my feet on the ground, I swung around to the side, it was as if I never had one of my legs…Another was a time I was walking my dogs, just about to cross the non busy road when out of nowhere my right leg shot up, I lost my balance hopping over to the right before gaining control, the rest of my short journey home was as normal…But my most recollections was walking the dogs when halfway of my 20 minute short walk, my walking went into what I called ” flipper foot, ” then further along, almost reaching home, crossing the quiet side road, I would go into ” robotic mode..” these are the terms I would then mention to my GP, as they were the best ways of me explaining to them…I had also mentioned my right hand was feeling like a ” dried shrivelled up old leaf, ” and that my toes were painful and burning…all these things stated happening around the same time, oh and not forgetting the way my bladder functioning were changing, again I told the medics, it was as if ” I had two separate pockets ”
I would also like to add, I had also noticed my right eye lid looked droopy but didn’t think twice of it, or why…it still does…
But my main recollections was something happening to my lower stomach, a kindof dropping feeling, then I found something preventing me from walking…
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Cyndi…
…thank you, any suggestions are helpful…one thing I do know is that, I need to stretch my legs out rather than to have them hunched up…I am also aware some mobility scooters have a carpeting affect ” non-slip ” which prevents ones feet from slipping…I plan today to go test ride the two I have in mind, but more local this time…One is a brand new model not even on their websites yet..
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That is one thing I miss, the long and relaxing bubble bath or muscle soak…I can get myself in, just by sliding down, that’s if and when I can get my heavy right leg in, now the getting out is not ladylike, if I can get out at all….
Sad to say my showers also are limited, I have become ashamed at the fact of my body cleanliness to the days I would bath every day, well not any more, it is a quick shower wash and shampoo my hair, and once a week I must add….It is the washing my hair standing in the shower now that I most dread…as I suffer Lhermitte’s sign as and when i bend my head – neck forwards…
Other things I would have had no trouble doing at one time, and believe you me I had done a lot which was office cleaning jobs, vacuuming – emptying of bins-rubbish ( part time evenings after day job, ) I cant do this now, it just messes up my body, same as hand washing my cashmere knitwear, spinning it in the dryer, it all takes it away from me, I have to sit down and rest till my body comes back to some form of normality, whatever normality is…I am sure others things will come to mind of what I can now do, or cant do, apart from the obvious, basic walking, or just walking the dog…
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Ed, thank you so much for your suggestions, I did look yours up from the start, in-fact that was what edged me on to now think seriously about getting myself a mobility scooter…I am not a traveller now, but for ease getting one into the back of the car, I am leading towards a travel scooter that closes to a suitcase on wheels, without the need for taking 4 or 5 pieces apart only to put them together again…Isn’t technology now marvellous, just a touch of a button and one self closes…I do need one with arm rests for security, and one that will get me both uphill and downhill, as this is where I now live, down in the valley..
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This is something I have been putting off, same as when first using a stick, followed by my rollator…but this topic is making me see sense…Well not anymore, especially when I am hearing-reading that ” buying a mobility scooter was the best thing IÂ ever done, it has given me my life back, ) ok, well maybe not quite…”
These last couple of days I have visited a couple of store, yesterday was a 170 mile return journey, a nightmare travelling journey but, I shop tested the one I had in mind, thankfully I never made the expensive mistake in just ordering it, it wasn’t suitable for me but…for maybe anyone else, the brand and make was Drive Medical – Travelite auto folding ( purple )…I do have two others in mind which are easily fold-able by remote or hand… I will post again once I make up my mind which one of the two after test riding a second time but, at a nearer mobility showroom…I shall be buying-ordering one this week…
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Debi…even in my own ignorance, all I really knew about MS was that it was a word to be feared, and that it was a walking problem…Of course it is only now that I have it, I have become far more aware that this Illness-disease goes far beyond, what a lot of people actually know about this…
I was that ignorant that I even thought it was an ageing Illness..even though I remember I have a cousin who suffered it when we were both in our 20s….
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Sorry Debi cant answer that one as we didn’t discuss MS at the time, during the three hours were were in each others company (as haven’t seen her since ) as my walking problems were just walking problems as I had mentioned to her…Strangely now, the more I read on what foods we put inside our gut, I find now I am leading more towards that theory…the theory that we may have caused this unknowingly ourselves, perhaps laying dormant until something we done set it off…
I would be Interested in hearing how many people who have had shingles, now have MS..
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The only thing the customers cant mimic is what is going on inside our bodies…that is the one thing that no one but the people who are living every day with it, will never ever understand..It is ok mimicking the MS things they can see but they cant mimic our invisible’s..
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Yes I suffer terrible Edema, it shows more over the top of my right foot, which is more puffier the the left but I have it in the left foot too…Plus both feet now have become very ugly with purple-red veins over the tops…oh and not forgetting the tightness they now feel, this has become an everyday thing…I have never been prescribed for anything…I have a bottle of Pukka (if I can name it ) castor oil which does tend to ease the tightness, although does nothing for the swelling…but that doesn’t get rubbed on my feet every day…
I too am inquisitive to read what others use…and which if anything is working for them…
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Sure I posted elsewhere but there is also talk of shingles which I caught guess it must have been 7 years ago now, it was too late to be treated at the time…
I also found and met a half sister a short time before my diagnoses, who herself had MS..we shared the same mom…
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Just found this spiritual quote…” Don’t pray for an easy life, pray for the strength to endure a difficult one..”
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Not to take anything for granted, especially our bodies…life and circumstances can change in the flick of an eye, and when one least expects it…
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Touch wood I have only had two scans within a short timescale, the second scan was with Gadolinium and when that call up letter arrived and I looked that word up on the Internet, ( as I look up most about everything ) I have to admit, it completely freaked me out when I read what it actually was that they planned to inject into my vein…Reluctantly it wasn’t the thought of going back under the MRI machine, although I didn’t enjoy that at all but, the thought of such a ” toxic ” compound going into my body, as the thought it may take a year or so while it clears from my body but, again, I went ahead with it because by now, I knew they were onto something and this is the only option I believed I had in finding out what was wrong with me…Whether i allowed them to do the right thing to me or not, it is done, of course I may now live to regret it…
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Well I wake up every morning, put two feet on the floor, start to hand walk the short distance to the loo, when once again reality hits me ” this MS is not going to disappear yet, as regular as clockwork I am wishing that one morning I would walk as I once did…but it never happens…Oh if only the last couple of years had just been a dream.”…So yes, MS has “mentally “changed me… I am still me to look at, I still have the same opinions on life as before, I look the same on the outside, it is the inside which has changed.. ) I call this the invisible Illness, no one who sees me knows what is going on inside my body, all they see is I struggle to walk…I also get angry, is that the correct term? of all the so called MS experts who know what, and how to treat us…they supposedly know all the ins and outs and the answers, well maybe they do but, until one lives with MS, we are the experts…
Yes I do get “angry, or maybe bitter is a better term,” that I became one of the unlucky ones who this illness- disease we dont see coming decided on picking on me but, I also turn this around by telling myself, at my age 67, if it wasn’t this illness, it may or would have been something else, no one can or will go through this life unscathed…We just have to take what we are given, and adapt to it the best way we can, we simply have no choice…
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Yes I am leading towards this as I caught Shingles, ( Herpes Zoster, ) guess around four & a half years before any signs of my forthcoming MS was manifesting itself…For me, this happened over a Bank Holiday, we had a bout of heavy snow, I was attending our dogs first Agility contest, ( It never went ahead, it got abandoned ) but, we were made to hang around waiting to see if it would, I have to mention, I was my dogs trainer but not his agility handler…Well to cut a long story short, needless to say, I had no Idea at that point what the rash and itchy pain was around the right side of my waist…When I eventually got to my local GP surgery, ( It was closed over the holiday period ) so by now it had gotten over the verified three days, and I was told nothing could be done to treat it, it was too late…
I too am left wondering if my untreated Shingles set off the dormant MS laying waiting in me…
Jackie…
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When we think, there are many other Illnesses that mimic MS…One I recently looked up was Guillain Barre Syndrome…I particularly took notice of this one, as it stated it starts with the hands and feet before spreading to the arms and legs, as mine had…Two things on separate occasions I had mentioned to my local GPs during conversation when I had visited for BP readings or blood sample takings etc etc. )
The main difference I have read is that, ” While MS destroys the myelin of the central nervous system – GBS destroys the myelin of the peripheral nerves…
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I am wondering why our MS medical teams are so quick with these words of ” you have probably had MS for some time..”
I only noticed ” strange things happening to my walking ” I guess, 18 months before diagnoses, which I can only assume, that what they actually mean by it is, MS lays maybe ” dormant ” in us, before it first shows itself…
Funny you mention a stroke Jon, as one thing I suddenly noticed was one of my eye lids was drooping, my right eye, and it is my right side that MS more affects me, so, I too had wondered if I had had some form of a ” silent ” stroke going back to the start of my leading up to my start of MS 4 – 5 years ago…But if so, I had an MRI brain scan that if I had had a stroke would have picked it up…think I asked my Consultant at the time and he said no..but I do wonder..
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Debi, I must look your column up and see if our lives compare as we both have PPMS…In the meantime I came across this poem, I feel this sums it up for most who suffer our ” Invisible ” to the outsiders, Illness – disease…This is not my poem, I did not write this…
Author – L Wilson, Chatham, Ontario, Canada.
Oh Beautiful Carnation
I heard just the other day
You’ve got MS within your stem
I wondered how though, as you look so very radiant
No one knows yet, how it got there or how to make it leave
And well, treatment is still just an experiment
Remember these words I share with you
Whenever darkness should cover your gentle eyes,
Listen to the music of the birds in their flight
Feel the sunshine as it descends upon your bold little structure
Reach out your leaves and touch the textures around you and,
When the wind blows and causes you to become unsteady
Hold on my friend, to a nearby branch
If it happens that your roots are unable to hold you up
Ride freely the wheels of the daisies
When you should tire, rest peacefully on the velvety rose
Above all this, should you ever be captured
by the peircing pain of thorns and thistles
Squeeze tight, to the comfort I sent you
Never forget your creator who is
there always to embrace you with
Love and serenity
Oh Beautiful Carnation
May the tears that fall from your eyes today,
Not be lost in sadness but given in courage and strength for each tomorrow
We all know that the carnation is by far the most vigorous in,
All of nature’s unexpected storms
Stand tall in your dreams radiant one
There are carnations everywhere
You are never alone in any garden
As I sent these words from my heart I must tell you,
Yesturday, I was told I have MS too
So may we all join our roots together and hold fast to hopes
That those who water our foundation,
may someday find a way
to make MS
lie dormant forever…
If not for the carnations of today then,
For the seedlings of tomorrow. -
Apologies, I omitted to mention that it triggers when one bends the head-neck forward…
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Oh yes every day, thank you for putting a name to it as it is on my medical records as Raynaud’s ( Phenomenon or Syndrome, ) but I always new that it wasn’t that…I have it, both sets of toes and right hand only, although the hand is more of a mild pins and needles, whereas the toes are painful and burning…I was never prescribed anything for them when supposedly diagnosed with Raynaud’s…
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The only oil I have used so far is castor oil – massage oil…which was suggested on some websites when I was looking up home treatments for my red – sore burning toes…and yes it does soothe but not get rid of, and thankfully not as greasy as it sounds…Other than that, I would be more in favour of holistic-alternatives over conventional, given the choice…
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I have become a fan of Michel Pépé – Le Jardin de Cristal and Yellow Roses … very relaxing and calming…I must listen to some of his other musics…