OT - Experienced over time; the Golfnut story

[golfnut]

Dear all,
reading about wheelchairs in "the introduction thread" there are several things that comes to mind.
One is the huge problem we create for ourselves when we try to hang on and "be as before" and the equally huge relif that arrives when we adjust and start using a tool that helps.
Another thought is the additional help the use of a tool gives us as others see that "something is wrong" and thus more easily accepts that we behave differently and/or need help.
And third and most important - how extremely valuable and helpful it is to learn from others that share your situation!! Warmest thanks to you all!

On a personal level I realise what a big and stupid block I often am to myself with hang-ups about things. An example is the need for help on airports, a huge problem which now has been reduced to a better proportion thanks to valuable input from my friends here on this forum. I understand why this scared me so, and I have today a more positive frame of mind regarding this situation. I know that when the time comes to go to the airport, I'll breeze through it all with a smile! (at least that is what I intend to do - I'll let you know if I managed! )

Your stories also help me to take a look at myself in so many ways. I realise how fortunate I am as I'm still moving about and my OT is not a major problem. I also realise that I need to use the tools I need today - not just have them at home "just in case". But (as an example) actually have my folding cane with me at all times and USE IT when I'm in a situation that will be helped by this "signalling tool" that the cane is for me.

Dear friends, thank you for sharing and for being who you are!
big hug from
the golfnut

[Di Di]

Hi DiDi here , did not know quite were I should write this ramble ....I have been getting my head around OT,and `balancing` a very busy preplanned March .Held a sculpture exhibition in a gallery 4 hours drive away ,stayed 4 days ,had a brillant time , opening went off well,all because I came clean on arrival , explained my OT,took a high chair with me and perched on it when ever I needed to.........everyone was relaxed with me because I had shared the OT facts I was dealling with , very liberating for me , after years of trying to cover up and keep up !


The next weekend was our 50th year nursing reunion ,I and another friend where organisers , I didnt share my problem at the dinner, but took my trusted ski pole to pass round the tables for speakers to hold [who ever held it had the floor] also find a couple of wines and I`m much more able to stand and wander comfortably arround?...next morning as we were all walking towards the old hospital for a tour , I found myself hemed in a narrow path with others chatting away and my legs just buckled ...28 retired nurses were at hand to haul me up !! shared my OT with a couple , and the knowleged was filtered through while the tour progressed .... lesson learnt ,tell people how it is, makes life much easier for all who care .....

got caught out the next day on a ferry ride across the harbour , best friend insisted I should sit on the top deck and could manage [easy going up steep steps ]...differant story comming down , friend held my arm as I got down , feeling the instant temor though her own arms , had I been on my own I guess I would have gone down on my bottom step by step ...anyway lesson learnt , dont be bullied into something I know will cause me grief. the up shot of that was my friend has witnessed how it can be ?
recovered straight away once I was on solid ground , but admit when these OT things do happen there is a feeling very sorry and a heavy saddness for my self and how things use to be
but they are fleating [touch wood] and I get a grip .

So now my ski pole goes with me and stuff what people think , if they ask I just say , `got a bit of a balance problem`, end of story !!

this weekend is the 100 year celebration of our surf club ...Ski pole and I have seen far worse old members attending ,thanks for being there ....DiDi

[Betty]

Hello Di Di,

I was just reading some of the posts and came across yours; no one had responded so I thought I would, even though it is a bit late.

Isn't it a wonderful feeling when we finally let others in on what issues we are having ~ our OT? I think we all have dificulty at first, but once we have told a few people, it becomes so much easier to just tell people. I have found, for me, I tell people I have a neurological problem. If they question what I have, then I go into more detail. Most are very helpful and understanding.

So...you were a nurse. Reading of your experiences, especially the one you found yourself on a narrow path with others and your legs just buckled...that would have been frightening to you as well as your friends. I have never had that experience, but at times thought they might. That's when I try to find a place to sit or lean. Sometimes not easy to do.

Also, regarding steps...it is easier to go up than down. At this point, I don't go up steps unless there are just a few, and must have something to hold on to in order to come down. Trying to come down stairs is almost impossible for me. That's when my legs feel as though they might buckle.

You have such a wonderful attitude about everything, which is GREAT! Keep that attitude and you will be just fine.

"but admit when these OT things do happen there is a feeling very sorry and a heavy saddness for my self and how things use to be but they are fleating [touch wood] and I get a grip."

I think most of us have had those feelings at one time or another.

Good luck and keep us posted as to how you are doing.

Betty

[Di Di]

Dear Betty ...how good to hear from you ,my new found NZ OT friend from the Chatham Island also read my rant,and made personal email contact which was great...sort of indorses things `we` are experiencing , appreciate the opportunity to vent ,not moaning , just saying how it is ...

I am involved with the NZ Academy of fine arts , as a council member we roam round the gallery through openings glass in hand , which has been a private ~hell~ for me for a few years now ...not so anymore !!
declared my hand , am now on the door, [leaning] welcoming guests collecting the invitations ,and saving the cost of a sercurity guard ...win,win
Now thinking how to have a discrete high stool to perch on ?

last week a occupational therapy assistant rang home out of the blue , to make a time to visit and bring a high kitchen stool , she sat and talked offering all sorts assitance ...the stool has small arms so sort of a chair , works a treat light to move round ,but very stable ,ideal for stirring the gravy .....
OT seems to be new, news to her and her collegues ? ...futher down the track ,maybe `us` NZ OT`s need to get out there and talk about it ....but in the meantime `homefront first `

thanks for being there,and under standing ...didi

[owen-lynettepickles]

Hi Di - great to see that you have been given some assistance (the unexpected visit from the Occupational Therapist with a high stool). Obviously your Neurologist is on the ball!! Perhaps they might have something portable for you to take to the Academy to perch on while being the "security/doorperson"??

You are right about us NZ OTers needing to get it out there, but I think working from the home front is the best way at the moment. When I was first diagnosed almost three years ago - where's the time gone? - I printed off copies from this website and gave them to family, friends and workmates to read in the hope that they would gain some understanding of what happens to those of us with OT. I have found that there is still a need to get the word out there, even around the Island. The other day I was standing - well I should probably say leaning on the counter - waiting to be served at the local grocery shop. As usual I was standing, legs astride, holding one leg, when another customer who wasn't aware of my condition joked about me having cramp. I just said to her that I wished that was all it was, then gave a short explanation of what I had. Think she was a little embarrassed as she made a quick getaway. I guess I could have my stick with me which would alert people to something being wrong, but I don't want to use it on the Island as I think I cope reasonably well here - even if it means leaning on the counter or grabbing a pole ....lol.

Keep up the swimming.
Cheers, Lynette

[golfnut]

Dear all,
long-time no hear from the golfnut! But here I am again and I have met a fellow OT'er! Amazing that I had to travel across the world to Vancouver, Canada to see one - but in BC is where she is based; Dear Chris! Thank you for coming down-town to meet, and for a great lunch! My impressions after our meeting is enforcing that OT can be so different for us all. Especially depending on the advice or explanations given to us by doctors, no? I think, correct me if I'm wrong Chris, that my thought of pain in the legs are due to lactic acid in the muscles as they tire from shaking and that we might over-work them with training - was a bit "new" to you Chris? And your thoughts regarding environmental pollution being a cause for OT was an interesting new idea to me. We had such a nice conversation and I'm so lucky having had the opportunity to meet a fellow OT'er. So if you ever have a chance to meet up with another of us - do so! It's a superb thing to talk to someone who knows EXACTLY what you are experiencing!
Coming back from the meeting with Chris I am thinking about causes and I wonder if emotional stress/trauma also could be a trigger? I know my life had some sever bumps before the OT started "blossoming"..

The I can report that I managed my flights just fine. I had had, as you might remember, some concerns about the airport "standing-in-line" situations. Now wheelchair assistance was ordered in advance and it worked very nicely. The sole silly situation was when I had been driven past the extensive passport queues in Vancouver and was left in the luggage area where I picked up my bag and golf gear... Some was a bit surprised... But, that is my condition! I can still walk and golf, but stand me in a queue and I'll probably sit on the floor in seconds!
The next flying experience will be in August when I bravely go to the Alps to try trekking… I must walk while I can – no?

I wish all of you a wonderful summer!
Sunny greetings,
The golfnut

[golfnut]

I realise my tread has changed... so I've edited the title and the first posting.. Amazing what you can do!
The thread started out with one intention - to try and gather all our time-lines, to see how the OT evolves over the years. And then, over the years, the thread has became more of "the golfnut's diary"! It's actually nice to be able to look back and see what happened and how I felt.. So I recommend the idea, to create your own "diary thread" - it's helpt me a LOT; all the kind input and responses and also the ability to recall things I've forgotten.. So from timeline to diary - a change in title and an explanation in the first message for those (anyone??) reading from the very start as well!

Warm and sunny regards to all!
the nut

[Betty]

Hello Golfnut,

So good to see you are back from your trip and are again posting. You mentioned you met Chris; I KNOW how exciting it is to finally meet and be able to talk to someone else who has OT. It is so nice to be able to talk about what you are feeling and experiencing and have soneone know exactly what you are saying. They truly understand!

Keep us updated on how you are doing....

Take care,
Betty

[golfnut]

Life goes up and down..

I'm in the middle of, but trying to get to the end of, a rather long and grey period in life.
Depression.
The word is heavy in itself and many of us perhaps relate the word to severe problems and self-destructive behaviour. I now know though that depression comes in many variations, the "colour" can vary from light grey to deepest black and the common factor is time. That the greyness persists over months..
I'm happy to have been able to realise that I needed help with my light grey version of depression before it became darker grey. I desperately needed/needs to stop the negative spiral of thought and have taken action to do so. The mere thought of, and first steps towards, help is helping in itself. So from having done almost nothing, life is returning little by little and I have even gone golfing for the first time since May. It's nice to feel a bit more energetic!

Is OT the main factor for my situation? No, I do not think so - but it has of course added to it. The feeling that something is now depriving me from "what I want", something has put "even more difficulties" my way, the unfairness of it all.. But, in all honesty, I must also say that the grey situation makes things more difficult than they really are. I mean, if a man without legs from knee down can run in the Olympics - why shouldn't I find means and ways to manage tremor while standing??
I feel that these issues are important. We cannot do anything about the OT itself, it's there and has to be accepted and managed. But how we manage it, how we accept our situation - that we quite possible can do something about, I think. I know I need to change my way..

I know and respect and fully agree to the feeling that some day's are best spent in bed doing nothing and just accepting that this day is quite hopeless. But what I'm now trying to do for myself, is to get a more positive outlook over time. That my general feeling about OT is not that it is a MAJOR hindrance in life, a steep hill almost impossible to climb. I want to reduce the situation to a bump that I can manage, or go around or find new solutions to.

From the outside OT is hard to understand. And many also question "the difficulty" of it. Being questioned certainly adds to the negative site of OT, that's for sure. But I wonder if my own positioning "this is really hard to cope with" can be changed to "it's quite hard at times, but I manage ok"?
Maybe it is not impossible to practice golf, maybe I can find ways forward instead of complaining that I can't and feel sorry for myself?

Let's continue to victimhood discussion in that thread - as said, I believe it's important. But this loooong message (thank you for reading it all) is placed in "my diary" as it is so much more my story, than a general posting.

Yours
the nutty golfer

[Betty]

Hello Golfnut,

I just read your latest posting, and entry to your "diary".

I must commend you for your honesty, putting yourself and your feelings on this site. You can't imagine how many people you will help by what you have written and done. You are taking care of yourself.

I think there are many of us who have, or are experiencing, some sort of depression. I think you have described it perfectly ~ depression ranges from a light grey version to deepest black. I do think that comes with the realization we have a condition which has few answers.

As I said, I think many of us experience some sort of depression when we fully realize what OT is and how is affects our every day living. It is life altering; but can be handled, and if help is needed, in whatever manner, then we should get it. It takes a strong person to realize they have a problem and take care of it. You are one of those strong people.

I do hope you will get back to your golf ~ which you enjoy so much ~ and enjoy each game.

Again, thank you for your honest report; it helps all of us.

Fondly,
Betty

[golfnut]

Hello all!
I hope you are enjoying a sunny and warm summer - even if the weather can play tricks on us, we can still try to feel warmth and sunshine within or get help to do so.
Here in Sweden the summer weather has been "variable" and many people travel abroad. I have stayed at home, having time to relax and read and "do nothing" which in itself is both nice and good for you (as long as you do not overdose and become lethargic!

My golf suddenly got a huge boost as a friend gave a tip that I can use to improve my game. From having cried buckets over the lost game as I could no longer practise as I used to, and by becoming a "strange bird" with my electric cart with attached stool, I now have a new feeling, energy and some hope - I can actually keep on and get better! And I can play putting those that look at me and think - what is that?? I can make a shot and theyäll see a golfer!
So my lesson to me is: if something slams in your face and stops you from doing what you really love to do. Just wait a bit - because with luck, there will be other ways, methods, openings that can move you forward. And in my case it has!

My OT is steady for now and I have learned my ways around my daily life. As long as all goes along the established routines I barely feel it. Everything is adapted to my ability today. But - if something changes or something new is added... You all know what happens.
Like now - I am trekking a bit as you know and the early mushrooms are here and there in the woods. So I decided to pick some and realised that picking mushrooms, blueberries and the like needs a new method as standing there, bent over to pick, is NO NO NO.
So I plonked myself down and sat among it all, picking to my content... Luckily I was alone... must have looked funny!

As for the greyish tinge to life - I'm working on it. And just working on it feels good. As with everything; getting started is the hard bit, but if you start - it does feel good!

Take care all! My next report will probably be about the trekking in the Alps, early in August.
/the nutty one

[Betty]

Hello golfnut!

It has been a while since you have filled us in on what is going on with you and it sounds as though you have things under control.

So happy to hear you are still playing golf and now enjoying it again. Tips to help your game would always be welcomed; especially if they help.

Life is constantly changing for us; but we learn to cope with whatever is thrown our way, and you are doing that....good for you!

I have never picked mushrooms, and I love them, but not knowing anything about which would be good and which would be bad...I buy my at the grocery. I think it's wonderful you are "trekking" and are picking your own mushrooms.

I enjoyed reading HOW you picked them as well as blueberries. Sitting among the things you enjoy would have been fun!

Also happy to hear things are looking a bit brighter for you. Summer, with some sunshine, would certainly help. Keep up the good work!

I will look forward to reading your next installment ~ "trekkiing in the Alps".

Keep smiling....

Betty

[golfnut]

The joy (?) of travels....

Dear OT-friends.
You are the only ones that will appreciate this story in it's full glory.. You will feel the embarrassment, and the humiliation - but also see the hilarious side of it. So:
This is the setting: a charter flight to the Austrian Alps, from Stockholm Arlanda Airport (meaning a flight within EU). Most of those on the flight will be trekking or are at least fairly sportive..

So, here comes a person to the gate in a WHEELCHAIR! From which she stands up and walks to the nearest chair thanking the attendant who has helped. I - cause yes it's me - felt the looks but it was quite ok. Not too many there and I pretended nothing had happened. And the help through the security was needed very badly. That's for sure.

Scene two is me asking the flight people at the gate to board first and they of course say yes - so, before everyone else - this strange VIP person, that arrived to the gate in a wheelchair, trips on her own two feet to the plane.. Yes, I felt some looks I can assure you.

Scene three, arriving in Salzburg. And this is when it becomes hilarious (at least looking back). When asking for assistance, you get it everywhere full stop. So arriving in Salzburg - which is a smaller airport with the plane stopping out on the tarmac, not "attached" to a gate, I exit the plane to find 2 (TWO) very nice sturdy guys (ready to lift me down the stairs I suppose?) with a wheelchair to assist this person that just gaily has exited the plane and stepped down the stairs to the ground. So I explain that I can walk, but need their help to pass any security lines. And they say bemusedly (but being extremely kind!) : there are no lines here???!!!?? ... And they wheel me gently and kindly the 70 metres I could easily have walked, and deposit me by a chair just inside the doors of the airport building where the luggage will appear on the conveyor band...
(no security, or passport check - as we're within EU!) 'So there I am - among all these people with sporty clothes and backpacks - beeing wheel-chaired again, and then I stand up, grab my bag from the conveyor band and walk out to the transfer bus.....

Oh dear, what an experience...
And then I arrive here in Bad Gastein which is high in the Alps and the little village is placed on a VERY steep hillside. So I walk down to the church, have lunch, and up again. And I can just imagine that some of those I met might have seen me in a wheel-chair...

So how do I feel now? Fine actually - I can see the crazy side of things and how strange it must seem to onlookers. But I have also a question (to myself mostly):
if the opportunity arises, should one then "stand up and explain" (or sit and explain) in order to both clear ones name in a sense but also spread knowledge of OT. Or is that just being a drama-queen, putting more focus on me, behaving strangely and having a very unique situation...
Most people might react to the wheelchair situation, but honestly - how much time do they spend on "me"? Not much.. I am absolutely sure they have plenty of other things to think about!!'
And perhaps others here have other "non-visible" problems they are not explaining and declaring?!

So the bottom line I think is:
despite getting funny looks, no one really cares that much - they have other more important things to consider than me!! My situation might not be as important as I think, and if I play it down, other's will too...

We'll see if this strategy will be the right one.

I'll be back with more reports after the actual trekking has started.
So far I've been upgraded at the hotel and have a room with a balcony, the sun is shining for all of it's worth and basically life is splendid!!

greetings from
the nuttier than usual one

[Betty]

Hey there "nutty one",

I just read your adventure of "The Joy (?) of Travels" and had a big smile on my face the whole time. I had a very vivid picture of what was going on, and hope you just smiled when you felt people were looking at you.

I can't wait for the next installment of your trekking in the Alps ~ Salzburg is such a lovely place.

Keep us posted, and enjoy your trip!
Betty

[golfnut]

Dear all,
this is a message from a wonderfully happy little nut!

I have been quite worried about this trip. How will my OT affect my trekking in the steep slopes in the Alps? Will it be possible to rest sitting down or leaning? Will it be "strange"? Can I cope??? Nervous. Sleeping badly...

But - YES!!! I managed, it was all ok!!!
I tried out the "red team" which was the "tuffer" of the two in this low grade trekking group. This is trial day so the guide set quite a hard pace with the intention that if you manage this: red is fine for the rest of the week. If it is too hard, change to blue. And I wanted to try red - but thought blue will probably be it for tomorrow and onwards....

And I can tell you that the first steep slope - it was STEEP! Really really hard. Heart pumping, face red, sweat pouring (sunny and warm day) - but OT ok!
The initial willage bit at the start was much harder OT-wise, very slow and many sightseeing stops with difficulties in finding places to sit. And steep paths initially along a streem with people stopping adimiring the view - pace very slow.. so when we then started walking after this city passage I felt I could not manage at all, I was ready to give it all up. Weary and tired and muscles hurting.
But as we went along, down the valley (and past a golf course where I almost took a wrong turn! ) it loosened up. And then, having managed the first steep slope up, the next one was easier and the guide have now "passed me" so that I can try the red group again tomorrow. I asked specifically as I do not want to be a burden to a group..
I have informed the guides of OT so that they know why I step aside finding a place to sit. The local mountain guide said towards the end he had not seen this at all (meaning it had not been obtrusive or special). The others that I have spoken to in the group, giving a brief explanation of my need to sit, have all taken it in their stride quite positively. So - no worries!!

Getting back to the hotel I have had a swim and some bubble bath in the spa and now feel very good!

So lesson learned?
Do try - we might surprise ourselves and manage more than we think!!

Happy smiles from a not so nutty nut in the Alps.