It feels as if things have been tough for a long time, worries and problems seem to pop up like mushrooms. Mostly we can deal with them, I'm a fighter, I don't give up, but I do get tired sometimes. It is hard to watch the gradual decline of a family member and it is even harder to to find the time and energy to offer appropriate support. Other problems are a different sort of battle, time consuming, exhausting, but with right on our side, dogged determination and persistence, I am sure that things will work out in the end. Worries or not we still do our best to enjoy the fun and challenges of family life. Life is here and now so we can't let it slip through our fingers.
We has some exciting and unexpected news last weekend. It will be possible for us to go to Norfolk on holiday after all. When we went to the bungalow last year we thought it would be the last time we would be able to stay there. The person who owned it, a family friend had been very ill for a long time and his family were not sure about the future of the bungalow. Sadly he died recently but his wife has offered us the chance to rent the bungalow again this summer. It has really cheered me up, it is lovely to have something to look forward to, I love the bungalow and that part of Norfolk holds a very special place in my heart.
Robbie is very excited about another holiday in Norfolk, he loves it there too. He has already planned a couple of trips to the North Norfolk Railway, a trip to Norwich to have a look at Crown Point, a day out 'doing the drags' on the middle weekend, the list goes on and on! I have already had to remind him that there are only 14 days in a fortnight and he has to leave himself time for his other favourite pastime, watching the ship with his binoculars. Once a 'spotter' always a spotter!!
He explained that it was very hard to cope with chronic pain. I am well aware of that, but I learnt long ago that he doesn’t want to be treated differently because of it. When I have tried to avoid situations or protect him in various ways I have had my head bitten off and been told loud and clear “I'm not a (insert expletive) cripple you know”. He is determined to be Robbie, a person who just happens to have a disability rather than being defined by it. He can do almost everything that everyone else can; he just needs to pace himself and to be creative about the way he does things. He doesn’t need a lot of fuss, all it takes is just a little bit of understanding and the freedom to do things his own way without constantly having to make reference to his disability. His comment reminded me that even if he is his usual bubbly self with a big smile on his face it is still hard, but in true Robbie style he is ‘just getting on with life.
The second thing that he did that brought tears to my eyes was something he wrote on Facebook
“....as they say, 'behind every great man, there's a great woman', I am far from great, but I would not have survived the last two and a half weeks, without the love and support of Mrs J! Thank you Mrs J, I love you very very much x ♥ x”
I am certainly not a great woman, just a very determined one. I am like a Jack Russell Terrier, I may lack height but I am as brave as a lion and I never give up. Robbie isn’t the only man in my life with a hidden disability; my son has autistic spectrum disorder. He manages reasonably well these days, but it hasn’t always been that way and there have been times when it has taken all of my strength and determination to ensure that he had the right support. Apparently I became a bit of a legend among his school friends because on a couple of occasions I had to deal with teachers who failed to take account of his specific needs. Thankfully most of his teachers were excellent.
Robbie’s words meant a lot to me. I am pleased that he values my support, I often feel useless because there is so little that I can do to make things easier for him. Perhaps just listening and trying to understand is more helpful than I realised - and heaven help anyone who makes things harder for him!
Robbie, I may be understanding but I don't miss much - don’t think I haven’t noticed that the quote you chose was suspiciously close to a Groucho Marx quotation!
“Behind every successful man is a woman, behind her is his wife.”
Groucho Marx
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| Photo by ZoofyTheJi |
It is not really true that I am lost for words. I could write about Robbie's missing pants (again), he got so wound up about two missing pairs of black pants yesterday. One pair wasn't missing at all, they were folded in the pile of laundry that I had taken up to the bedroom the previous evening. Apparently I hadn't folded them correctly and on the way to the station he patiently explained how to fold his underwear and amazingly he survived - I must be mellowing in my old age! The other pair of favourite pants were not far away either, he 'found' them this morning and stood there waving them at me triumphantly in the style of a bull fighter - it isn't the best sight first thing in the morning!
I could write about the roof leaking when we had torrential rain last Saturday night. It dripped through the ceiling on to Robbie's side of the bed, it ruined some of his precious railway books and it spoiled the covers of some of his vinyl records. He was so angry about it. After rescuing his things and finding a container to catch the water he stormed off to sleep on the sofa and I was left wide awake worrying about how much it is going to cost to fix the roof. It will be a huge amount because it will require scaffolding.
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| Photo by Laura Jones |
What I really want to write about is how much I love Robbie and how useless I feel sometimes. I am not a soppy, sentimental sort of person but I do care deeply about him and I have been terribly worried by the level of pain that he has been experiencing in recent months. Pain is exhausting and constant pain can be really lowering because it affects everything you do and it changes the way you feel about yourself. Robbie is so strong and so determined to be 'normal' (in his own unique way) but it gets him down when his back hurts and his legs misbehave. I can't take his pain away but I can be strong and help him to accept the need for more effective long term pain management. I can make sure he takes his tablets and help him to cope with the rather unpleasant side effects. The tablets make him very tired, waking him up in the morning is like trying to raise the dead. Sometimes he gets very cross with me and he has been known to tell me to go away in no uncertain terms, but I don't take too much notice of that. One way or another we will get through this. It will take a long time and a lot of trial and error to find the correct medication and the correct dose to manage the pain without devastating side effects. I need to be strong, I will not let him give up.
