OT - Experienced over time; the Golfnut story

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Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: OT - Experienced over time; the Golfnut story

Post by Betty »

Hey golfnut,

So good to hear your first report from the Alps. It does sound as though you have done better than you anticipated and you should feel much better about your trip. Just remember...this is a trekking trip and not a golf trip! :lol:

Looking forward to the next installment.

Enjoy!
Betty
golfnut
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Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: OT - Experienced over time; the Golfnut story

Post by golfnut »

I'm back! I survived, I managed, I walked, hiked, trekked - at the most 550 hight metres...
What I'd like to suggest to you that follow and read my "diary" is this: try and you might be surprised!

It is so very easy to think "I can't" or "it's not possible as I have OT" and it's definitively easier to stay at home and resign to fate than to take one's courage and jump feet first (!) into the unknown...

I knew when I went on this trip to the Alps that if I could not manage the trekking, I could still take walks in the valley. I also knew that if walks in the valley was too much I could stay at the hotel verandah with a cool drink, reading my book, enjoying the views and the fresh alp air. I do believe that a trip somewhere almost always gives various possibilities - at least enough possibilities so that it's worth giving it a try...

I realise that I might not be able to trek up the steepest hill next year - or I might. The only way to measure can or can't is by trying! So this was not my first and last trekking trip - oh no. I'll definitively try this again, to another place. But the thing I've found is very important is to have the possibility to adapt from day to day, depending on the group plans and your own physique, so that you can trek a high path one day - but stay on flat ground the next in case the legs protest too much.

And yes, I know some of my friends here cannot do this at all. But I'm also fairly sure that some could - if they just gave themselves a chance to try.

But now I will read some books on self esteem and on coping with emotional battles. The emotional stress of the airport situation going home was very hard to manage. Not because of the OT per se, but because I myself had such a hard time ignoring what I believed and felt was thousands of angry looks. I knew already sitting there that the problems (angry looks) were only in my head, but travelling with people that had seen me trekking and walking and now suddenly bypassing all lines in a wheelchair!!! I dared not move and walk to the tax-free, I was so emotionally drained. Silly head and silly thoughts - but there you are. Some things can be very difficult depending on "who you are". But this cannot be. I have to find courage to manage the airport situation better and I will!

take care everyone,
let's move forward, shakily but steadily so to speak...
Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: OT - Experienced over time; the Golfnut story

Post by Betty »

Hello!

So good to read your latest entry to your diary. I find it very interesting how you cope with what all of us experience with OT. You have found a way to continue to do the things you enjoy and even challenge yourself to do things you question. I admire you for that.

I understand your feeling of people staring at you in a wheelchair when you had been hicking, walking, etc. When I first requested a wheelchair at the airport, I felt strange, but have gotten over that. I know my limitations ~ they don't.

So happy you had such a good time ~ now for your next adventure.

Good luck, stay well and keep writing....
Betty
golfnut
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Location: Sweden

Re: OT - Experienced over time; the Golfnut story

Post by golfnut »

"Introducing OT to the wild side"

Dear all,
as you might have read here if you follow my story, I started trekking this spring in order to have someting to do aside golf. And, you know how it is, you get completely involved in your new adventure, reading about various items you might "need" to buy, finding out good paths to trek in the surroundings, reading other's stories about their trekking in the local area or the Swedish mountains or Nepal or...

So I found an interesting website for all kinds of outdoor activities including climbing, cycling and canooing and, lo and behold, I started a blog there! I've been writing about my start-up local treks in the area (the first solo-walk! :) ) and also about my trip to the Alps (and about shopping! :lol: ). But - and this is where OT comes into the picture - my latest post is about OT! I write about "something that is there without being seen and that causes me to behave a bit differently". I also recommend any interested party to read up on OT here on Gloria's excellent website. So far some 900 people have read that posting, and this means 900 people that are "healthy" and hikers/sporty people of all kinds, they now know about OT!
My aim with the posting is simply to suggest that we might be more openminded about different behaviour, not only regarding OT but in relation to the zillions of syndroms that are rare and unknown.

And what about my OT? Well, I'm still very happy as the meds are keeping tremors in control on a level where I'm now quite accustomed to how it is. I manage fine and can cope quite OK. And I've started a "mental body-building" as a trip including flights and assistance is coming up in October. This time though, the "others" will not have seem me skipping over Alps, nor will it be small airports where anything extraordenary happening will cause a "major event" - so I'll be just fine!

take care everyone,
your nutty golfer
Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: OT - Experienced over time; the Golfnut story

Post by Betty »

Hello!

So good to hear from you again; I always look forward to reading what you have to say. You make everyone think "anything is possible".

I think it's wonderful you have posted about OT on your new, interesting website. To think some 900 people have read your post and are now aware of OT ~ that's GREAT! How many people might you have helped?

I was pleased to read the meds you are taking are keeping your tremors under control ~ on some level. Anything which helps is a step forward.

I will be looking forward to your next post; and to how things go for your next adventure in October.

Good luck and keep smiling! :D

Betty
golfnut
Posts: 184
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: OT - Experienced over time; the Golfnut story

Post by golfnut »

"Life is what happens to you while you're busy making other plans" (J Lennon)

And when life just flows by it means to an OT-person that meds are working and OT is being steady and not progressing I guess? Cause I'm still in that pleasant place where OT is not too bothersome. When I really think about it, I see all the small routines I've created to manage. Where I stand and how I move around the house, how I make my breakfast and how I do all other household things - it has all been adapted so that it works quite ok.
But this sense of "ok" is also a bit of a hindrance. I know OT is there and that it can be very difficult if I change my routine or something happens. This actually means, I think, that it is easy to stay in the comfort zone and almost start being afraid to change or to try...

This weekend, while golfing, I realised suddenly that I managed much better than how I perceive I'm doing. I am actually much better off now than last summer when all was terrible. But in my mind I'm still in the very bad state and golfing is hard and difficult due to OT (leaving the game itself aside I mean). But in reality it isn't THAT hard anymore thanks to meds! I have in my mind one "picture" and it has frozen in time..
Is this making sense? It's hard to describe - but I mean that I tend not to find out what I feel now, I am a bit stuck in how it was when it was really bad and I stay in that feeling.
So this wake-up call has led to a decision to look closer at the truth and not just "keep on believing" and also - more importantly - a decision to try things that I have "decided" I cannot do. We'll see how it goes (and you know, talking about trying is not the same as actually doing it! :roll: )

But first I need to pack and prepare for a visit to SouthAfrica. Part work and part leisure, wild-life of course and seminars and visits to "Cradle of Mankind" and other things. A report from the OT angle will be posted I promise.

Take care everyone!
the nut
golfnut
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Location: Sweden

Re: OT - Experienced over time; the Golfnut story

Post by golfnut »

Now I'm back from an incredible adventure in Gauteng in South Africa. And yes, I have seen lions, zebras, wild dogs, elephants, rhino aso aso aso - wild and free in the vast game researve. Felt sometimes as if I was part of a TV-programme - quite unreal and oh so beautiful!!
But the most important was the conversations with the "regular" people; the waiters and cleaners at the hotel, our drivers and others. I have learned very much about a country with a society that is quite different from the life situation we have here in Northern Europe.

OT made some situations almost unbearable.. Part of the trip was a seminar/AGM with functions and meetings. A dinner in the bush was intended to be a networking opportunity around food and barbeque. But I had to sit apart from the group at a table. With company yes, but I wanted to be with the others!! Several situations happened where I had to go away and sit down - after a bit more and more people understood and learned about OT, but it is still frustrating.

In another situation we were walking in a cheetah sanctuary with huge cages for the cheetah. Oh how beautiful they are, and how sad that these sanctuaries are needed... Anyway, I had brought my stick and managed quite ok leaning on that and walking around a bit when the shakes started - thereby being able to listen to the guide.
It was clear that I managed to stand longer here, than in the barbecue crowded situation. The possibility to choose to lean or walk and having space does make a difference. Can it be that with stress the medication is not working so well? Perhaps the brain signals to start the tremor is stronger with stress and thus bypass the medication?? I think so..

I did not go on the game walk, knowing it would be impossible to "stop! Look at the impalas just there" - sad. But game drives in a jeep is very nice too.
One museum that I visited was very interesting, a huge mansion with furniture and things, left as it was when the people lived in it. This is something I enjoy very much - but it was very difficult. The victorian style is a bit crowded and there were no chairs to sit on for visitors of course. We rushed there to just managing to reach the last viewing, so no time to talk to the guide and ask for a portable seat. As the rooms were not sealed off, it was possible for me to discreetly walk to the other side of the bedroom and lean carefully against the bed for support! A hand on a doorpost here and there also helped. But it was hard, tiring and quite stressful. However, the museum was sooo nice it was all worth it. But I have to try and remember that museums like this is not exactly the very best for me.

So - to summarise: a new thought for me is that stressful situations probably bypasses the Gabapentin that usually helps so well.. I'll ask my neurologist about it when I see her later in October.

Oh, almost forgot: lot's of help in airports and this time it was bearable. I'm learning! :P

Warmest greetings to you all from a chilly Stockholm - autumn is here!
the nutty one
Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: OT - Experienced over time; the Golfnut story

Post by Betty »

Hello there!

Such a wonderful overview of your latest trip; it must have been awesome!

So happy to hear you did pretty well; it sounds as though you managed better than most.

I always look forward to reading your latest posts; such detail, I feel as if I had made the trip as well.

Waiting for your next adventure.....stay well....

Betty
gloria
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Location: New Jersey, USA

Re: OT - Experienced over time; the Golfnut story

Post by gloria »

Golfnut: What a wonderful coverage of your trip to South Africa. You are amazing the way you coped with the challenges of being in a new and different environment.

Thanks for sharing your experiences!

best regards, Gloria
Di Di
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Location: Wellington, New Zealand

Re: OT - Experienced over time; the Golfnut story

Post by Di Di »

Welcome back !!...thank you for such a report ...and great to hear how well it all went ...and your feelings when at times you `had` to sit out from the crowd , totally relate to that !

the trick is to be so interesting others will join you...`Me` thinks you do that just fine :)

great you got the chair help in the airports ,think that is one of the hardest things for us to accept with the progression of OT...but it certainly takes all the pressure off those traveling with us , with all those dedicated personal employed to see us respectfully and safely through .

DiDi NZ
golfnut
Posts: 184
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: OT - Experienced over time; the Golfnut story

Post by golfnut »

Thank you all for your kind words and encouragement! It means a LOT!!

Didi:
On this trip my colleague from work joined me as it was mostly a business trip. At airports we were told she could walk alongside the wheelchair and be my "caretaker". Thus she also sailed elegantly through all checkpoints without having to stand in any lines. She now declares she cannot travel without me!
:lol:

Now it's early morning here and I have promised myself to start using the rowing machine again after having been away.. So - I'd better do that!
"Talk" later!
owen-lynettepickles
Posts: 54
Joined: Sat Jun 06, 2009 4:26 am
Location: Blenheim, New Zealand

Re: OT - Experienced over time; the Golfnut story

Post by owen-lynettepickles »

Hi Golfnut
My husband Owen says exactly as your work colleague did - "we'll do that again, it's so easy to get through the airport" - when I first used a wheelchair!! Didn't matter to him that I felt very self-conscious in it. Loved your African trip story. We visited South Africa in late 2009 not long after I had been diagnosed with OT. Loved all the animals, and such a diverse country and people.
Cheers, Lynette
golfnut
Posts: 184
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: OT - Experienced over time; the Golfnut story

Post by golfnut »

Hello everyone,
I'm writing this at 7am on a glorious Sunday morning. We have a few freezing degrees, a tiny bit of snow on the ground, wonderful fall colours on the leaves of the trees and a blue sky without a cloud. A perfect day for a long sunny walk. I'm so happy walking is not a problem.

I have recently seen my neurologist and we have decided to up the Gabapentin from 300x3 to 400x3 and see if that helps a bit. When at her office I realise the tremors do come very quickly but also that they are not supersevere. I can stand there for a bit with the tremors without being extremely uncomfortable as this is a situation when I'm relaxed and not in a "difficult position". (By difficult position I mean being in a crowd or other situation where I cannot get away or sit down, such a stressful situation makes the tremors much worse).
I will also re-start b-vitamins as the bloodtest shows it to be low.

My new worry is not the tremors but a steady and problematic ache in the uppler thigh/pelvis area. Seems to be some muscle or tendon or something that is very angry. Being in pain, mostly while sitting or in bed is not very nice. I'm usually totally without any pain and having this for weeks now is really becoming an issue. So I'm getting an x-ray shortly and I am currently seeing my chiropractor, trying to find out what it is and how to mend it. Pain - go away!!

But for now - it's out and about in the sun! A long walk with a good book in my Ipod...
Take care everyone!
owen-lynettepickles
Posts: 54
Joined: Sat Jun 06, 2009 4:26 am
Location: Blenheim, New Zealand

Re: OT - Experienced over time; the Golfnut story

Post by owen-lynettepickles »

Hello Golfnut
I too suffer greatly from pain in the thighs - like a constant toothache!! I try and keep going during the day so I can ignore the pain but when I sit down in the evening and when lying in bed, I become very aware of the pain. Because I cannot tolerate most painkillers due to a 'delicate' stomach, the pain does tend to consume me. I have found that it is much worse in cold weather and wonder if the fact that you are going into your winter it is aggravating the pain for you. It's definitely the case for me, leading to me making arrangements to move to a warmer part of New Zealand off the Island. By the end of January I will be living in the town of Blenheim (area famous for its Sauvignon Blanc wine - not that I drink it!) It's a big move for me as my husband will stay on the Island at his job, but we've both decided it will be the best thing for me to help cope with the pain. As he is on the Mainland at least once a month on business, we will make time to see each other then.

I'll be interested to know if the chiropractor can help with the problem as once I'm living in Blenheim I will have much easier access to such medical specialists.
Keep in touch - I feel your pain
Lynette
podhorodeckisz
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Location: Sandbach, UK

Re: OT - Experienced over time; the Golfnut story

Post by podhorodeckisz »

Hi Golfnut.
Interesting what you say regarding the pain in the thighs\pelvis area. I've had that for about 5 weeks now. I liken the pain in the thighs to a mild pins and needles sensation. The pelvis pain, although constantly there, is much worse when I'm bent (like when sitting) or standing with weight on it. The only relief I find from it is when lying straight. Both of these pains are markedly worse after walking too far or when stressed or angered. It's strange, as it's as if there is an on\off swith in my pelvis. I put these pains down to gait and the way I use my limbs to compensate in difficult situations. I was advised yesterday to do Yoga, but I'm scared to attempt this as I've noticed in the past that the wrong kind of excercise makes matters worse. I'd be interested to hear how you get on.
Regards, Stash
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