Tuesday, 13 March 2012

3 Year old daughter with juvenile arthritis is only half the fight!

My 3 year old daughter also has arthritis, she has poly articular juvenile arthritis. After dealing with arthritis for nearly 10 years, I had a rough idea of the struggles she would go through, but I didn't realise struggle it is for a parent looking after a child with arthritis. The daily care is something that doesn't bother us, that is something we would do for our children no matter what. The biggest struggle we have is trying to get health care and education specialist to give our daughter the support she really needs.

Arthritis is massively misunderstood in adults let alone children, one health care specialist even compared my daughters arthritis to another child suffering from tonsillitis! These kind of comments really are not helpful, in reality they belittle the daily struggle an arthritis sufferer goes through daily.

Our latest battle is to try and get our daughter a learning support assistant for her at school. and it looks as though it could be a real battle. Plenty of people are saying that she needs the help, but everyone is pointing at each other when it comes to funding this, and no one wants to take responsibility. We are made to feel like a massive burden and at times second class, as we require extra help to get her into the school system. Schooling is a basic thing in life and is something every child needs, all we are asking for is an assistant to help her in the first few months as she gets knocked over very easy, this has left her to struggle to adapt to new surroundings and people.

 After speaking to people in similar situations I realise that as a family, we are not the only ones going through this type of struggle. Because of financial cuts throughout the UK, many people face a struggle to get help and access to services that they really need, many face bigger struggles than we are facing at the moment.

Later in the year, when the Olympics start and you see the UK lit up and glorified, keep in mind that behind the fireworks and celebrities that thousands of real families face a struggle to get the basics in life through no fault of their own. Its families like ours that this government want to pretend don't exist, all in the hope that we don't need any financial help or support. How proud this coalition government must be of themselves.


Friday, 24 February 2012

Disabled Parking Update.

Today I received a phone call from the supermarket that I emailed about their disabled parking bays. Although they were very apologetic, basically they told me there was nothing they could really do to enforce the parking bays. The problem is that they don't run the car parks, its down to a third party car park company. I will be contacting this company this week seeing if they will do anything about the disabled bays, but I don't hold out much hope.

The supermarket did say that when their staff walk through the car park they will note the illegally parked cars registration numbers and call them to the help desk, then explain to them that they shouldn't park there, then ask them to move, I hope they do this but can't see it myself. They also said that if I arrive at the supermarket and find the disabled bays full because of illegal parking, that I should note the numbers down, then get my carer to pop into store and they will announce them over the tannoy. I didn't like this idea but if its the only way for me to get in and out of the car, I will have to do it. Would love to hear of more people asking the supermarkets to ask these people to move their cars, eventually they may get the message.

Friday, 17 February 2012

Disabled Parking Bay Abuse

Recently I have been really disappointed with my local supermarket for not enforcing their disabled parking bays. This is one of, if not the biggest supermarket chain in the UK, so its not a resources matter.

For me, like many others, not being able to park in a allocated disabled parking space makes any kind of shopping trip a lot more difficult, and at times I have to turn around and drive else where. I don't like people to go out the way to accommodate me, but a bit of common courtesy isn't out of the question, surely?

I would be ashamed if I was able bodied and was making life a lot harder for someone who needs a disabled space. For them its the fact that they can park closer to the store, for myself the wider bays enable be to get out of the car and into a wheelchair. On occasion people have been getting out of the car at the same time as me, have glanced over at me and had a pang of guilt, but instead of moving the car they put a fake limp on for a few yards until they think I cant see them anymore, they are that pathetic.

I will be writing to the head office of this supermarket brand to ask them to help the less able bodied amongst us. I know its not a major thing, but it is one of those little things that make life easier, I will have to remind them every little helps! It wouldn't be hard for a staff member to occasionally patrol the disabled parking bays and leave a notice on the offending cars reminding them that they shouldn't be parked there.

I will keep you all informed on any replies that I receive off them and if anything is going to change

Sunday, 12 February 2012

Having a Flair!

Having a flair is nothing new to me but this one I'm going through at the moment has really hit me hard. I think the reason for this is that I have had a good couple of weeks, so when I'm on the roller coaster that is arthritis I have felt this dip more than ever. The aches and pains just make me feel so tired that I don't feel like doing anything at all which results in feeling very depressed.

Hope this doesn't last too long because I'm feeling like rubbish and its an effort to even smile at the moment.

Monday, 30 January 2012

Healthier Lifestyle Benefits Arthritis

For a number of years now my doctor has been telling me to eat healthier and it could benefit my arthritis. Me being my normal stubborn self ignored this, just putting this advice down to the "healthy lifestyle" campaign that was going on at the time.

This new year I made the decision that I would change my lifestyle in the hope that I might benefit and get some sort of relief from my arthritis. After a bit of research I decided that as well as eating healthier I would also avoid eating red meats as much as possible. I had read a few articles where people claimed that reducing red meat intake would help relieve some of the symptoms of arthritis. I decided to try it for myself, that was a massive decision for my self as every meal I have contains meat, and quite often that was red meat. My plan was to eat healthier, reduce my meat intake and try to avoid red meat altogether.

In all honesty I was very sceptical to say the least, but have had a very nice surprise. Since I started I have had all the benefits of a healthy diet like a bit more energy and feeling a bit perkier etc, but my biggest surprise is that I feel my arthritis is under more control. Although the pains are still there my flare ups are far less frequent than what they were. I'm not sure if it can be put down to cutting the red meat out or just the  benefits of a healthier lifestyle, but I can honestly say that it is working for me.

I would to here if anyone has any other things they feel has helped their arthritis as I am now very open minded to try other things now.