|Me on floor with orange plaster and pink tubi grip sock thingy,don't know what it is called, dog who helps me on floor looking a little terminator ish and friend (who has EDS) on sofa.|
There is a feeling of being seen as a scrounger if you are disabled, whatever your circumstance, whether you work or not, are clearly very ill or having a moment in time where you can at least pretend to look well despite having to take high doses of morphine in order to put on a good show, the same morphine that makes you throw up at night etc. However among the din of general anger there are some great people out there and there is amazing support.
They say when times are bad you know who your friends are, this is true.
We are lucky enough to have a few marvelous friends out there, not forgetting my ever supportive parents and one soppy dog. I publicly thank them for brightening my husbands and my time as life has been very difficult for us and our son recently. We have been in what I can only describe as total lock down. I am totally wheelchair bound, need help night and day,I always need help but my husband barely gets a moment to himself nowadays.I can't get to the loo on my own, cant dress myself at all, cant get to my hair brush,can not access my pants drawer or my wardrobe, I can't drive anywhere and yet have tons of out of county medical treatment so the only time all of us venture out is to go to hospital appointments with my parents help.
We are desperate to use our minds, we have good skills and intelligent thought so we spend lots of time playing with our son, teaching him English and French, playing with water and seeing what floats and sinks, playing with different textures with him, soft cotton wool, hard ruler etc. When our little man is asleep my husband and I find time to chat with one another and try desperately to come up with ideas we could set up from home be it a social network group, a support group an art portfolio, we both say whatever we can to one another to keep each other upbeat. It gets difficult because we have no where to go, we can not get out, we have no change of scene, prisoners live better than we do at times and all we can do is support one another to persevere in our hobbies ,be it this blog or my husbands art work,, in the hopes one day someone will see us and by miracles of miracles we might get recognised and given work that we can do at home, an office is not do able, I need help with every practical event of my day, my husband can niether drive due to his pain nor walk far, I can not drive at all due to being in plaster and non weight bearing for several months which is the same year in, year out as I have had major surgery every year of my life since I was eight years old, in fact the only time I didn't have joint related surgery was the year I had a C section to give birth to my son!
|My lovely Canine Partner doggy, Yasmin and darling son enjoying the garden and sharing their thoughts of the day.|
So if it wasn't for friends family and canine partner, life would have been appalling.However most of all my son would have had a very quiet time. Having people come over and chat to Christopher, making him smile and have a change of face has been wonderful. We had two friends over who cooked a home made meal for us which was total heaven, we have been living on basic microwave meals as my husband is so exhausted at the end of the day, he is bent over in pain, so this was lovely. One of my chums comes over and makes my husband and I laugh a lot, he is a total kid and great fun and there when we all need him.Another came over before this weekend to help make decorations for a gathering we had at the weekend,she brought over some lovely books for Christopher.Someone came over to do my nails and we chatted all things girly. Mark and I met a new friend who is a lovely girl, kind, but best of all an artist which is great for my husband as I can only give so much encouragement about his art!
Friends and family make disabled people's lives worth living,especially when times are very difficult but very much make the difference when you worry for your child that your illness is making his or her life hard.I don't want that for our son, I desperately want him to know that however mummy and daddy are we can still be a worth while friend too and that he doesn't have to deal with our bad times, we have adult supporting people who are there for us and he has no need to feel responsible for our present or future lives, we manage, we cope and we are strong and we do indeed at times "get by with a little help from our friends".
|Mr Funny and Lady Arty|