It has been a long while since I have been here. But my circumstances have changed and to write anything more than a few words is extremely difficult. I find if I have written a lengthy message to someone that right as I am about to send it I drop my phone or tablet and all my hard efforts is wiped. After that, it’s just too hard to start again.
I am trying to be good and use the voice recognition that both of my Samsung phone and tablet have. Again it throws in the odd bizarre word and you still have to go back and put in full stops so the reader has some clue of what you are talking about. I have always been a super fast typer. I think at one point I was around 130 words per minute so it is equally frustrating that when you do want to say something it takes forever. Today I have decided to crank up my Jurassic computer and just start writing a few lines here and there and saving it before I publish. Let me just Kick Start this poor old clunker
At the beginning of August I had a stumble tripping over some boxes in the garage. As I started to fall I grabbed an over door clothes hanger with my bad hand and my good hand smacked into the rear glass of my parked car. Most of my weight somehow hung on the clothes rail. I was really very surprised that my bad hand really didn’t feel too bad. My right hand was a little sore from hitting the glass of my car but really things could have been a lot worse.
Strangely enough 3 days later my right arm (which was my good arm) came on over a few hours to excruciating pain and my elbow locked in the straight position. Any slight movement became agony and I just couldn’t get comfortable anyway. This extreme pain stayed with me for a number of weeks. I did have a GP come to the house at Day 3 and pronounced that I he believed my crps had spread. The back of my shoulder was sweating profusely and the rest of my arm was purple and freezing cold. He said that I will wait around 3 weeks and see what function I am left with after it settled down. The first month was terrible. Having one hand with full blown crps and no strength and an arm that would not bend meant that I couldn’t do anything. No arms. I couldn’t get to the toilet in time and couldn’t wear anything but 1 dress in which someone would have to thread these broken arms through with fine precision without causing more hell pain. I couldn’t be left alone, I couldn’t even pick up my phone and ring emergency with the arm function that I had. I couldn’t open a door and leave the house if it was on fire. The first day I struggled through on my own but after that, someone had to be here with me.
At this point I rang my care company that shower me 5 days a week begging for extra services, I needed someone to come to shower me on Saturdays and Sundays as hygiene had become a huge issue when no arms work enough complete many many tasks. I was told that I had used the maximum hours that were available to me and the best she could do was to fill out some paperwork and try and get the ball rolling for short/emergency care. Within 2 weeks I was able to have 2 carers come a day but this only last for 2 weeks. The afternoon person would come, change my clothes and make dinner for us. Those 2 weeks we ate like kings it was fantastic. Another company was coming in for 6 weeks to shower me on the weekend. Phone call after phone call desperate to get help quickly and regardless of how bad your situation is…it won’t make the government departments move any faster. I had to apply to disabilities for ongoing extra services and now 13 weeks later my urgent case still sits on the managers desk. They had been waiting to ask the lady that interviewed me some more questions about me and she had been on annual leave for 2 weeks. For the record she has been back for a week and still nothing has happened. That was the end of me. I had kept it together for 12 weeks thanking my lucky stars that it could have been worse. But after this long there is a point when it is just completely infuriating.
Somewhere in the many many people I have spoken to I was in touch with a government department that look after young carers…which means they help my 16 year old son in many different ways. It’s trying to ease the burden on these kids so they can finish school to their highest ability. This beautiful young lady is now making these calls on my behalf and doing her very best to try and get my weekend showers returned for until I go through another round of interviews with another department. The biggest issue seems to be that I am under 65 and this is where urgent emergency help is impossible to access. The biggest problem in my life is that I don’t have a partner. He would have to be in charge of showering me and changing my clothes. Being under 65 with no partner is impossible. It all comes down to funding. The organisation that has been showering me on the weekend charges $98 for 2 hours weekend care. It all comes down to a word called funding. If you are over 65 I think this falls into the federal governments budget and under 65 the states budget. After jumping through hoops for this extra care, it may be granted and it may be well out of what I can afford or I may find it impossible to find one of the care companies that still have enough funding left to take me on. My frustration lies in that if I am struggling with hygiene issues is it actually humane to leave someone in this position for 13 weeks plus. I hope that once this is up and running I still have enough puff left to contact the Health Ombudsmen and relay this ridiculous system. I can’t be the only single parent in this situation.
Anyways we wait…and we wait….
CRPS Shazz 