Thursday, 25 August 2016

It's not all mobility cars and carers :0(


Where do I start?

I was thinking the other day after being scalded for the third time in one shower that a lot of people have a warped idea of disability in this country.

They think it's all free cars and parking and home helps and sunshine! That couldn't be further from the truth!

My husband and children are autistic. My husband had an accident at work and broke his back. Several specialists have told him he will never work again. Then I have Fibromyalgia which in turn gave me Type 2 Diabetes and other issues.

I applied to the council for help and asked for a bedroom downstairs (as I have been stuck in this room upstairs for over 8 years now) and a wet room. They gave me the run around for a year saying I had been approved for the grant but would have to wait to get to the top of the list, so I wait a year then they tell me the £31,000 won't cover what I need and I have no money to add to the grant so I am still stuck in the bedroom.

We applied in the past too with the backing of my daughters specialist for a walk in bath with a shower over it. The bitch (that is the nicest word I could think of) who came out to assess us first said oh we don't do anything for people who stay upstairs, and finished with "can I just check she has got legs and can walk" regarding my daughter.

Fast forward to now and my daughter is now 13 and needs help to wash her hair. She has to cover up with a towel while my husband does it in stages as he can't bend down for long. I tried it and was in agony for days after. I can't teach her to shower herself for fear of her being burnt. If someone in outer mongolia turns their tap on while I am in the shower off goes the cold and you can picture the rest. Taking into account I am on a shower stool and can't move quickly you can understand my frustration.

We asked Yorkshire water to fix the problem and because we own our house apparently we have to pay roughly £1,500 to them to run a pipe to our boundary then we have to pay yet another plumber to do the rest, which I assume will be another couple of thousand!

So while the people out there think the disabled have things handed to them on a plate I am here to prove that just isn't true.

We are living in a house that doesn't work for us with no hope of improvement or moving, seeing my days out stuck in a bedroom in a house I hate. This house isn't worth enough to sell and buy a bungalow which would suit all four of us. If we sold it to rent we would lose our benefits and would have to spend all the money on rent and living expenses till we had none then claim again for benefits. I pray everyday for a lotto win, not that I am greedy I just want to get the hell out of this house!

Thanks for reading this far (if you did)
Just wanted to show the real picture of disability in Yorkshire!
Hugs :0)
xxxJoolsxxx


Monday, 4 July 2016

Is this a Fibromyalgia flare?






I finally got diagnosed with Fibro in 2003 but had symptoms years longer than that.

I was slow on finding support groups online and had no one else to discuss it with.

One thing I did see people talking about was when they were having "Flares". I had no idea what they meant as I felt like death warmed up most days and everything was such a struggle. They said that they were unable to do anything and that is me everyday almost.

Until this last week that is. We had to take our Daughter to A&E and had a 3 hour wait to see the nurse and then a wait to see the doctor. The chairs were not the most comfortable and there was a baby screaming the place down the entire time.

I thought I had done quite well until I went to bed on Monday night and didn't get up till Wednesday morning! Then again went to sleep half way through Wednesday woke up for a bit then went to sleep till Friday spent all morning yawning and went back to sleep and missed yet another day!!

I miss the odd day here and there but to be washed out for an entire week (and I still don't feel right this week either) has thrown me I must say. I already feel useless and this made me feel 100 times worse.

It seems all I do is sleep these days and the least thing is a major struggle. So am I having a Flare and how long do they last?

Thanks for reading (if you did )
Hugs
xxxJoolsxxx
:0)


Friday, 15 April 2016

Where have I been?



Hi all and thanks so much for sticking with me.

I haven't done a post or a youtube video in ages as it was one thing after the other

I was soooooo tired and depressed I suppose to the point I just could not be bothered with anything. Awake all night and asleep all day and not seeing my kids for days on end!

Then we (Thanks to the Family Fund) had a week at the seaside in a caravan which boosted me a bit but then I caught the lergy lol.

Some sort of cold/flu thing with the cough from hell which I still have now three weeks on! I am feeling more human daily though TG.

Soon I will be back to normal (whatever that is) and blogging and youtubing :0)

Thanks so much for reading (if you did) and I hope to be back real soon
Hugs xxxJoolsxxx :0)

Friday, 29 January 2016

Fibromyalgia is making me sick!




At present I am desperately trying to bring down my Blood Sugar numbers. I have eaten nothing but cheese, sausages, chicken and salad for at least two weeks and they are still sky high.

The district nurse came out and took some bloods then all of a sudden the Dr wanted to see me. Shame he isn't so keen on taking me seriously or providing me with test strips to keep the BS under control when I wanted to see him!

What really pisses me off about the whole thing is, if I didn't have Fibro I wouldn't be diabetic. I was fine till the meds made me gain weight and then the Fibro made me less active. 

It has ruined my life in more ways that one. Not only am I housebound (well bedroom bound), I am unable to do anything physical and get wiped out from a shower but now I have a carbless life to look forward too now also. 

There is absolutely nothing to look forward to and no one cares.

Thanks for reading (if you did)
Hugs :0)
xxxJoolsxxx

Friday, 8 January 2016

Sleeping beauty I wish.






21st November 2015 was the last time I published anything and here we are now on 8th January 2016!

I have never really understood the term Flare that people use when talking about Fibromyalgia. I always feel like crap and never noticed it getting any better or worse.

Since November however I have felt like a zombie. I sleep and sleep some more and still am so fatigued I can't string a sentence together. Is this a flare? The pain level is worse and I have no interest in anything at all.

I made it downstairs Christmas day for dinner and that is all I have done in months. I have great ideas for videos on youtube apart from the fibro ones and just haven't got the energy to set up the camera! Then there are all the people on FaceBook posting pics and saying how wonderful their lives are making me want to hide under the duvet till they find a cure.

I felt I had to put something in this blog and let all the people at FIbro Bloggers know I was still around but I just wish I had some wisdom it impart or something happy to report!

Happy New Year to all of you out there. Lets hope 2016 is our year.
Thanks for reading
(If you did)
Hugs :0)
xxxJoolsxxx