Re: What I've been up to

Cate and Celyn, I am full of admiration for you both. You are very strong ladies and your love and care for your husbands shines through your posts...

Re: What I've been up to

Thank you EZ and Mags. Others understanding gives great support. I have always said that a partner, and family, suffer from MND too. They don't have the physical symptoms, although they go through every step of the disease psychologically and suffer very much in other ways putting their lives on hold.Many people do not recognise this.

Re: What I've been up to

Celyn and Cate, I am sure you get frustrated with your men occasionally but, looking at this through their eyes, I am sure they know they have loving,caring wives and that must help them a lot.
You two are very special ladies and I am sure that I speak for many OFF members when I say that our help is very limited but, if you ever need somebody to just talk to you will always find somebody on here to help!

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Thanks. Twink. People with partners in this position with any life limiting illnesses, not just women the husbands too, are the proverbial cat that gets kicked. If the table was reversed I would be hell to live with.

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So would I

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I think both ladies are amazing, and I mean truly amazing. I really don´t know what else to say.

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Like I said Celyn there are some lovely people here, each one offering words
of encouragement and support. The odd thing is that I know I would be so down if I had this illness. I would often be overwhelmed at the way my body was giving up on me. Losing control of everything would scare me half to death.

I had cancer some years ago and couldn't even watch adverts for programmes 'Coming Soon' Oh lor I will be dead by then.

I can't believe how brave you were to do all of that travelling Celyn. How I admire your resilience.

I am not typing much tonight as I had cortisone injections in my shoulders and they now ache, bless them they wait until evening or bedtime to ache.

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Well, must tell you about my adventure on the train to Milton Keynes to see my grand children. Safhia is 10 and Isaac is 14months. I booked the train tickets on line and was given a number for passenger assist. The assist people with disabilities. My disability is I am unable to walk or stand for any length of time, so I use a wheel-chair.

Each stop and station had been alerted to me travelling and smiling station staff were there to take me and my chair off the train and take me onto my next train. It was very stress free for me and my carer.

We got to Milton Keynes and my son and grand children met us. We went into the shopping centre and found the Disney Shop which I love. We bought our gifts including a pillow for Keith to rest his arm on, a Tigger mug for me, ear phones for my granddaughter and a cuddly toy for Isaac.

We then went to a Weatherspoon's where we bought books and finally went back to the hotel for dinner. Dinner took ages basically because of bad service which meant that we did not have our after dinner swim.

The children were marvellous and although they must have been tired they were perfect angels. Isaac making everyone he met fall in love with him.

When the children had gone home my carer and I shuffled off to our rooms and a spot of television. In the morning we had our swim and a rather delicious cooked breakfast.

We then wandered about looking in more shops and buying only Krispy Kreem doughnuts for Keith. I found that Keith was returning home early so we came back on an earlier train.

The service was just as good even though we were not in our correct seats. The communication between station staff was brilliant.

Keith was tired out but happy that he also had had a good venture, his was filmed and will come out as another YouTube vlog.

I have to say I do love Milton Keynes, it hasn't changed much since we lived there. The southern voices and humour were good to hear, but so were the northerners too a really happy time.

When we checked out to the astonishment of the girl behind the desk, when she asked if I was satisfied with my stay I said no. The reasons were simple. The swimming pool which they proudly advertised was chock full o' babies from 9am to 4pm having swimming lessons. We went in for dinner at 7pm and were still in the restaurant at 9.30pm. We had two courses and drinks. The girl had no words for my dissatisfaction as I think we Brits always say 'yes everything was fine' I on the other hand lived in America for 8 years and learned you only get the service you deserve, if you don't complain things don't change.

I shall write to the head office and grumble and I will write to the train service and tell them they are brilliant.

Keith had a good time but the flat bed at the hotel was not comfortable so we need to look for a hotel chain with automatic beds.

Re: What I've been up to

This thread was wiped from my subscribers list. So posting seems to be the only was to reinstate it.

Re: What I've been up to

Thank you Celyn ... I've not seen this thread for a while and there were a few posts I had missed