Discover Challenge: How I learned to be open minded and to live with it

This is not easy. It is all about I, me and myself and began perhaps 25 or 30 years ago, who knows? I was then 40 years old, in the best years you could say. I did not have more problems than the others and above all I was lucky enough to have no threatening  problems. I had a job, a family, and above all we were all more or less healthy.

I liked to go for walks in the country with the family. One day I had a so-called “dizzy spell”. I mean we all get them from time to time. I did not fall, but felt unsteady. I was also prone to small accidents: tripping on a rug perhaps, or an uneven surface. Once I fell down a complete stairwell, but luckily no breakages, just one of those things. It can happen to all of us, so why worry. The giddy attacks came now and again. At the same time my father had similar problems, diagnosed as Meniére – caused by a disturbance in the inner ear. He was already over 70 years old and these things can happen, probably ran in the family. We could talk about it. The doc gave me tablets as Menière was something that came, disappeared for a while and suddenly returned again with no warning: arriving in surges.

I suppose a main factor was my fall in London on Tower Bridge. I was on holiday for a week visiting my father and went for a walk with a friend in the evening to visit the new Docklands area of London. Little did I know then that out of the blue, with no apparent reason, I would fall. I had the quick reaction of placing my arm beneath my head to break the fall. The only thing that got broken was my arm. My friend took me to the hospital where I remained for two days, after having my broken arm pieced together again.  These things can happen.

Now we must fast forward to about 18 months ago. For some time I had been having problems with walking. I was now a golden oldie, and things no longer work as well as they should in age I told myself. Remarks were also made I should get out more, do more walking, otherwise I would get more rusty as I got older. This was true as I was never a person for keeping fit. I preferred to sit at home with my computer or a book. What annoyed me most of all were the people who said “is there something wrong with you? Do you have walking problems?”. I could no longer walk as well as earlier, but I was no longer fresh and ready to go – it must be old age.

And then it happened. I had a fall, was taking a photo, slipped and could no longer stand up on my own. This was nothing new, it had happened now and again, but with the help of a chair or another object, my husband, I could stand again. This time it was not possible. A taxi was called, I was admitted to the ER at the hospital, no breakages were found, and I was sent home to recover. I visited my doctor. She decided I should visit a neurologist to clarify my various “accidents” and dizziness.

I let things take their course, why not. I had an open mind about these problems. I was now approaching 70 years. After the first scan of my back, my open mindness was becoming a little shattered. A day later the specialist called me, said there were some irregularities and I should also have my head scanned. My open mindness had taken a knock, it was disappearing. When I arrived at the X-ray institute they told me that I should also have a thorax x-ray. I was slowly shutting down. My specialist had already mentioned the word “illness” when talking of my problems. An appointment was made for further examinations at the local hospital responsible for neurological examinations.

Was I ill, was it serious? I decided to make an Internet journey through various channels of my problems and my treatment and discovered two letters “MS” Multiple Sclerosis. Everything pointed in this direction. The confirmation followed after the final examinations at the hospital with various tests and a lumber puncture withdrawing liquid from the brain. My samples were sent all over Switzerland to various laboratories.

How do you react? I did not react. I suspected it myself, it seemed to me that everyone else was reacting.

Walking cane

This is the current result. The cane on the left is the one I use at home, and the flashy cane on the right is for the general public. I mean if you have to have one, then go the whole hog.

In the meanwhile I attend physio therapy once a week to maintain the feelings that I still have in my legs. Funny how you begin to reflect on your past “healthy” life and realise what happened then was probably due to MS. My dizzy spells definitely, part of the “surge” mechanism.  You do not get MS at the age of 70, it is there already, and slips into your body over the years. There is no cure, but you can stablise it by taking medicine. I was summoned last week to my specialist to talk about treatment. The decision was to be my decision, as there will be side effects, but nothing serious. Do I have a choice? Yes I do and do not. I am no longer getting surges for the plain reason that that stage is already gone. The next surge might be a big one, and the prospect of walking with two canes, a zimmer-frame or even a weelchair is becoming a possibility. It seems I am now chronic, but, where there is a will there is a way. I am faced with a choice of taking drugs, or just carrying on until the inevitable happens.

This week-end I will be receiving a large parcel, express post, with ampules of my drug. I am to put them into the fridge. On Tuesday afternoon the nurse will be visiting to show me how to go on the needle, every second day one shot and that is now the story of my future life. I am open minded, can be glad that I can do something to stop this illness that wants to steal my body from me. My problem is walking, otherwise I have been lucky up to now, but no-one really knows what the future might hold, but does anyone?

Discover Challenge: How I learned to be open minded and to live with it

35 thoughts on “Discover Challenge: How I learned to be open minded and to live with it

  1. I am glad the doctors were able to give you a diagnosis instead of having to call you back for test after test. The fact that there are things you can do to create a better life for yourself in spite of the MS is good, Pat. And heck, with that flashy cane…who wouldn’t want to show it off. Hoping all goes well for you. Thank goodness they did not tell you to stop blogging!

    Liked by 1 person

    • I had many tests, but knew myself what the result would be before I was told. The doctors have to be careful what they say. My doc did mention I should not looks so much into Internet, because a lot of the stuff written is not always so exact. I knew this myself, but if you look on the official sites it is OK. I ordered the cane online as I did not like the boring canes they had in the shops. There was also one with a scottish tarten pattern, but I decided on this one. I even have my name on the cane which I ordered extra (black on a silver background – what could be better).

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  2. Pat, thank you for writing about this deeply personal condition from which you suffer. You always write with such a light-hearted tone, but I imagine this illness is knocking you for a loop. I remember some of the earlier injury instances you’ve written about here. Now to find out they were warnings of a serious illness is very unfortunate.
    I wish you well in future and hope your new health regimen will bring you stability and security. I admire your resolve to make the best of everything. Someplace in the world, your willingness to talk about your MS gave someone else the resolve to face their own illness with courage. May you be well.

    Liked by 1 person

    • Although it is a perfide illness which sneaks up on you, to me it was not such a shock to know I had it. I told the doc actually before he confirmed it, so he did not have a chance to say anything else. For me it was a logical conclusion to my medical history. It is not something you immediately think about and the real bad cases are usually discovered at a younger age. I was one of the lucky ones as it had no real bad symptoms at the earlier stages. I have walking problems, but this can now be slowed down. My eyes are OK, I can still blog (thank goodness) and other stuff still functions OK. It could be worse and hey, walking with a cane has its advantages. You always get a seat on the train or bus and everyone seems to look after you.

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    • Thankyou. I have known it since the beginning of the year, but had so much on my mind otherwise, my dad passing away after his illness, I never got round to being clear about it.

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  3. Your openness about your journey through this is a great help to others and it also enables us to hold you in our hearts and in our prayers. Treatments have moved on so much over the years and we hope it will be a great help to you. Sending you much love and thinking of you. xxx

    Liked by 1 person

    • Thankyou. It is a fact, nothing to hide, and as you say so much progress has been made over the years. There is no cure, but it can be slowed down. I am now 70 and when I am 80 or 90 who knows what happens, even if you do not have such an illness. My dad lived to be 100 years and 7 months, passed away in June, but he was also walking with a zimmer frame or in a wheel chair and did not have any serious illness, just old age.

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  4. Thanks so much for sharing this and I wish you well. The medical technology has expanded a great deal over the years which is a blessing for many. I agree about searching the internet…one can get wrapped up in figuring out what is happening to them so an official site is the way to go. I also know that doctors do not always spell things out for you…..why get concerned when the progression is slow and you can go about your life with less worry…at least that is what I think they have in mind when they talk to you. I believe I get that reaction when I talk to my neurologist….I ask if things will get progressively worse and I get…not necessarily. In the meantime I take the meds and try to keep an open mind.I’m just told that I have neuropathy and restless legs syndrome. Life goes on and we live it the best way we can.

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    • I was worried at the beginning because it all co-incided with my dad’s illness and at the age of 100 I knew anything could happen any day. My specialist is a good guy and he reassured me that I should continue with the examinations because there is time and if I have to break it up I can always continued afterwards. My tests were all finished eventually and I could travel to London with no problems. I now just take things as they come.

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  5. They are making progress all the time on MS. So much research is in progress so if you can delay the worst of it for just a little while, there may be many more choices available soon. I’m just hoping I don’t have to deal with this too soon because I’m already taking so much medication for other things, I’m pretty sure my body won’t tolerate anything more. I can but hope. So far, so good. And I can tell you this from experience personally and with close friends who have M.S. — it can get very bad and then get a lot better all of a sudden. It almost never goes in a straight line. A rather whimsical disease.

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    • he idea of the shots (Betaferon it is called) is to slow down the pushes, although apparently I don’t get slow pushes now, as I am chronic and one day there will be a big one. That is why it is better that I take the drug. I also know a few people with MS, but they are not on medication. What I miss most of all is being able to go out with a camera and take photos everywhere. I am really no longer so sure on my legs. If I take the cane it is ok, but I have to find somewhere to put it and then stay steady to take the photo. – Oh, do I have problems 🙂

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  6. I’m glad that you know what it is that is causing your problems, Pat, and that there is medication to help. I know that you’ll continue to make adjustments and continue to receive and give pleasure with your blogging and photography. With all of these changes right now, a trip to Basel must be out of the question. I had hoped we could meet when I’m there next week, but I guess we’ll have to be happy with an on-line friendship. Keep that wonderful sense of humor. I’m sure it will help in the darker moments.

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  7. MS is an autoimmune disorder, in your case, your immune system malfunctions and destroys myelin (the substance that coats nerve fibers in the brain and spinal cord) in my case it attacks my joints, I have RA.
    I didn’t even know what an autoimmune disorder was until I got diagnosed. I too must have had it for a while, and it came out in full blast when I quit smoking. First, it was just in my hands, then in my knees and feet. I had a hard time walking and felt fatigue all the time. They put me on medications right away, and I agreed, mainly because I didn’t know anything about it. They recommended Humira or Enbrel shots both medications with a long list of possible side effects.

    I started my research. I wasn’t thrilled about taking medications that are toxic and work like chemotherapy. We, here in the U.S. are being controlled by the pharmaceutical industry; it’s hard to find a doctor that takes his time to discuss alternative treatments.

    Speaking a few languages came in handy, and I started research in Europe and Asia. Come to find out that many people with different autoimmune disorders live a pain-free life without medications, my doctor didn’t want to hear a thing about it. I tried different things, researched more and found a diet that helps me to live a life without any flares or pain. It is a tough road to go but so worth it. I don’t take any medications at all.

    I am sorry you have to deal with it. It does sound like you are in good hands. I hope that the medication will make your life easier, but you might want to look into different lifestyles as well. Sorry for my novel, I thought it could help.

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    • As soon as my suspicions arrived, one of the first things was to discover what is happening to me. Yes, it is a nerve illness and there is no magical cure. It is not everyone that takes medicine for MS I noticed, because it is not always necessary. I too was not rushed into trying this and that. It is now quite clear that I need help to slow down the advancing symptoms, and with MS I am not sure that changing my life style would help very much. I do not have pain as such, it is more a immobility that, in my case, the legs no longer do so well what they should. As you say it is a nerve problem, and they probably no longer receive the signals they should. I notice myself it is a general slowing down and does not improve with time. What the medicine will do is to slow down the development of MS as it will not get better on its own.
      I have diabetes 2, since at least 30 years, so living with a diet is part of my way of life for many years. It was the diabetes that also postponed my diagnosis. I had pins and needles sensations in my feet, I had the feeling that there was a “second skin” over the bottom part of my legs, the sensitivity was no longer the same. My neurologist, after the first examination, told me that these symptoms had nothing to do with diabetes, and so the examinations began to discover what was wrong. I have been reducing carbohydrate for the last half of my life. Not only this but I stopped drinking coffee at least 10 years ago as I noticed I tended to have digestive problems after drinking it, which were quite acute. I then discovered the same symptoms after eating my breakfast of cereal with milk. I decided to explore further and after having the same problems with eating ice cream, which appear about 30 minutes after eating it, I discovered that there must be a lactose sensitivity somewhere. I spoke to my GP and she confirmed this. I now not only have to avoid my sugar intake, but anything to do with milk including certain softer cheeses. My life has become one big eating problem. I still get attacks but not so frequent, and must be very careful what I eat – there is so much hidden lactose in various products.
      As far as a diet is concerned with MS, I have not yet discovered anything that would point in that direction. For me there is only one possibilitiy now and that is medicine, whatever it is. I can take tablets, but medical experience shows the best results with injections. This will not be cheap for my medical insurance, but everything is covered and I trust this solution. I do not think that eating the right thing will help me, especially as I seem to be living my life eating the right things at the moment. I rarely buy ready foods, cook everything myself and do not even enjoy eating out in restaurants because you never know what the food contains. Lactose can be hidden everywhere, even in mayonnaise, although it shouldn’t be.
      Thanks for yur advice, and I hope that you now have your RA under control.

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      • I do have RA under control. The flares are caused by certain proteins that I have to avoid. I gave up all dairy products, sugar, and don’t eat chicken or eggs. I switched to a healthy lifestyle with lots of vegetables, fish, fruits and legumes. I feel sensational.

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        • A very good choice. I have less problems with eating meat than with veg. I just have to be very careful what I eat. I now make a point of eating my banana daily. they are healthy and have no adverse effects. Otherwise I am very careful with fruit. Not all fruit seems to agree with my digestive system, especially grapes. Milk products are a thing of the past with me. there is a lot to be said for what you eat and I am gradually discovering what is ok for me and what is not. It has been confirmed that I have no infection, it is just what my body can digest with no problems and what it cannot.

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  8. I love your attitude. Life is precious while we have it and can enjoy all it has to offer. I too suffer an chronic illness, kidney in nature inherited from my mum. I think we have to do all we can to stay above ground, enjoy what we have and embrace the ones who love us….best wishes to you and I love that public use cane….way to go…

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  9. I am sorry to hear your diagnosis but glad you are getting the help and assistance you need. Like an earlier poster to this thread, I also have RA and give myself weekly shots and take methotrexate to keep it under control. The downside is that it weakens my immune system so that if I get sick, it takes longer to shrug it off and while I’m sick or have any kind of infection, I have to go off the RA meds which sometimes leads to an RA flare-up. Kind of a Catch-22, you might say.

    When it’s at its worst, I’m often down and disheartened but when I put things into perspective – as you appear to have done as well! – I’m better able to deal with my situation, which I’ve had to deal with now for more than 13 years.

    I love your ‘flashy’ cane – good on you!! I wish you the best. Hugs!!

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    • Sorry about your RA. Although modern science advances quite well, there are so many things they do not yet have in grip .It must be very painful. I have perhaps been lucky not to have to deal with my problem so much up to now, because no-one really discovered it as being a problem and neither did I. Now it has sort of exploded in my face, but I can cope – I hope. I often get frustrated no longer being able to cope with things I enjoyed, but being a golden oldie I cannot expect to be as fit as I was 20 years ago.

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  10. Life throws these things at us to make sure that we are paying attention doesn’t it? I do hope that the drugs are a help. Thanks once again for your wonderful Good Morning posts. I can’t seem to get through breakfast without them now that you have me hooked.:)

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  11. You have a really wonderful, calming, matter of fact attitude. It is refreshing, as are you! You will take this on with ease and grace like everything life has ever put in your path!

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    • Unfortunately there is not very much I can do to change things. Just wait for medical improvements. at the moment the path is not so smooth to walk, but I will get there eventually. I can always treat myself to a new dynamic stick. Perhaps they will begin to make them with motors and gear changes to speed it up a bit.

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  12. I am simply in awe of your attitude. The “perspective” you have chosen!! Of course, that’s the frame I always look through, the HOW is someone viewing a circumstance. And you are a great example of what I am always “preaching” about. So glad you liked my flower so I could find you!!

    Thanks for your brave sharing. I look forward to more.

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    • And since writing this I have been injecting my medicine and am getting along quite well. It is just a matter of dealing with stuff as it comes. Who knows what the future holds for any of us, but I am coping and that is the main thing.

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