New Year, New Outlook

We are here at the start of 2012, like many people this has led me to lots of reflection on the past year. In general 2011 was hard for me as I learnt much to my dismay that my 2 year old girl also has arthritis as well as me. At first as you can imagine, this was heartbreaking as well as worrying of what the future may hold for her and for us as a family unit. As the year went on there was one person who coped with this better than me and my partner, that was my daughter. She has been so brave dealing with the pain and lots of hospital appointments. I know first hand how frustrating living with arthritis can be, so how a two year old must feel must be horrible. Out of everything to have happened this year my biggest inspiration has been my daughter and the way she has taken arthritis in her stride.

One of my resolutions for this new year is to raise peoples awareness to all forms of arthritis including juvenile arthritis.

Happy Christmas

I would like to wish all my readers a very happy christmas. I have enjoyed putting my thoughts into a blog andI look forward to blogging more in the new year. Happy Christmas!

Winters on its way, Arthritis will make me pay

Over the last month or so, the weather has really dropped of and always seems to be chilly. Already my arthritis seems to be badly affected by this weather more than it has ever before, I literally do feel the cold in bones, I often say its like having tooth ache but in my bones instead of my teeth.

Aches, pains and stiffness are just some of the ailments that the winter chill brings in with it.  Put all that alongside wet and slippery pathways and icy paths you can understand why this season doesn't fill me with cheer. A large supply of grit will be ordered to hopefully allow me out of the house in the ice, although it does annoy me having to buy it to grit a public walkway as the local council are unreliable.

My heating bills are astronomical, in my vain attempt to ease the arthritis I like to keep the house as warm as possible, even though it doesn't make a huge difference, it makes me feel happy locking myself away inside a warm house. I must seem like a right grump when I keep barking at people for leaving doors open around the house.

At this time of the year many people are busy planning for the festive period that is approaching, not me though. I'm looking forward to spring, this will hopefully signal my arthritis to ease up slightly and hopefully lessen this horrible nagging ache I have.

Would love to hear off anyone who has any tips on keep their arthritis in check during the colder weather.

12th October is World Arthritis Day

Today is World Arthritis Day,  it encourages people to spread the word about this silent disease which can attack anyone. Such is the lack of knowledge about arthritis in the the general, most people think it only affects elderly people as well as vastly misjudge the affects the disease can have on a person and their life. Little  Everyone has heard of arthritis yet very few really understand how devastating disease it can be. My arthritis is so severe that I have to use a wheelchair, yet many people still think arthritis is just an ache or pain. This kind of attitude and misconceptions of arthritis can result in people who have the disease can have difficulties getting help and services to ensure life can run as smooth as possible.

I really would like to see arthritis more commonly spoken about, so that people can understand what arthritis is rather than believe myths that undermine what it is like to live with arthritis. I have lost count at the amounts of time people have been shocked that my arthritis started at the age of 21, only to be shocked  further when I tell them my 2 year old daughter suffers from juvenile arthritis. When my daughter starts school we are hoping that this may raise parents awareness to children suffering from arthritis, we would be more than happy to explain her condition so people can understand more rather than think of her as a grizzly, moody child.

People really need to hear more about arthritis and events like World Arthritis Day is an excellent idea. I really hope that days like this can gather momentum and really be a benefit to sufferers and their families all over the world.

Inspiration, Support and Guidance

Initially, when first being diagnosed my specialist sat me down and went through the facts about arthritis. That was useful but through the shock of the diagnosis, I didn't really listen to as much as I would have liked to, and came away with loads of questions I needed answers for. The next time I went to see the specialist, I made sure I asked everything I wanted to know about arthritis. The specialist obliged with the answers, but for me who understands very little about joints, muscles, inflammation etc, the answers were too "medical" and I felt it very hard to relate to the answers

Desperate for some advice and more information I started searching the Internet for some kind of support and guidance. As I feared at first all I found was sites that explained things about arthritis, but did not really explain what it was like to live with arthritis. Then there were the sites that claimed to have the "only genuine cure for arthritis". Those sites upset me because I knew there isn't a cure that will make my arthritis go away, it just seemed to belittle what people with arthritis go through on a daily basis

Then finally I started finding sites written by people with arthritis or who have dealt with people who have arthritis. These sites were a bit of a revelation to me, finally I could discuss and learn what it is to live with arthritis. I found these invaluable and cannot overstate how useful these sites have been for me and my family through our journey of arthritis. One of my favourite sites is http://www.rheumatoidarthritisguy.com/ , this site is excellent and is something I read regularly. Its sites like his, that only helps sufferers but also informs non-sufferers what it is to live with arthritis.

I really wish that after being diagnosed with arthritis I was directed to sites that contained information from other sufferers. They are my modern day support group and have really been useful to not only me, but my family also. I thank anyone who has written about there experiences with arthritis, as  I know its not easy to be open about something that can have such a huge impact on your life, you are all true inspirations to me and other arthritis sufferers.

Having to shout about being disabled to be heard.

When I first started having mobility problems, I had the full range of emotion to go alongside it. I felt angry it was happening, frustrated that I couldn't do things I used and even felt embarrassed that I wasn't seen as "normal" anymore. It took me several years to become more comfortable with the fact that I was a wheelchair user. I have always tried to get on with my life, without causing a fuss or bothering people. At times I made life harder for myself than it need to be, simply because I didn't like asking for help in case people thought that I was a nuisance.

Recently thanks to the coalition government planned cuts, services around me are weary at committing to helping due to worry about funds. To get some help now I have had to actively chase up and even pester people and departments to make sure they don't forget that I exist!

Even more worrying is the planned cuts to the disability benefits, it is sad seeing and hearing disabled people
scared about the future. We are lucky in this modern age through the social media etc, that people are standing up and shouting for the lives of these people.

I don't know if these concerns that people are expressing are all in vain, sadly  I think it may be. What I do know is that I'm very very proud of these people who are passionate enough to stand up and fight for everyone who is being affected in these cruel cuts.

Its just sad that people are having to get worried about these cuts, its really unfair to put this on people who have already got huge challenges in life. I always thought the governments would protect the vulnerable people but at the moment it just seems as though they are cannon fodder for David Cameron, Nick Clegg and this Government.

Is this the truth the coalition govt. wants to ignore regarding the welfare reform bill?

Please click on the newspaper below to read the DAILY STIGMA
Is this what the headlines should be reading? We have all heard the fighting speeches from the government, but what is the truth, and how damaging is the welfare reform bill going to be on the most vulnerable in our society? There are far too many risks involved in this bill, all of which gamble with lives of the most vulnerable, often unheard people in our society. Its all well believing what the government says if they are correct, but when it comes to the Welfare Reform Bill, more and more people are questioning it. Surely when such a major reform is being questioned and queried it is time to step back and examine it to see wether it is the righ thing to do. The feeling that me and many other disabled people have is that the government are going to steam roll this through parliment with no care or thought for the people who are going to be gravely affected. Click on the paper to read through the other pages.

Not another flare up!

This week has really tired me out, my arthritis has really attacked me, all week its been flare up after flare up. Arthritis flare ups can happen at anytime, sometimes you know one is on its way, sometimes you don't. Explaining to someone that you need to change your plans for that because your flare up can be hard, often people question is it really happening because they might not be able to see the swollen joints etc. That is one of the problems with arthritis, it is silent, people cant see it so they automatically question is it really there!

I cant predict how each flare up is going to feel, I have bad ones and not so bad ones. It can be hard to get myself comfortable during a flare up, what helps one time may not help through the next flare up.

Sometimes a flare up can be so painful it leaves me tired and fatigued, when I feel like this it can be best for me to relax, and try and let it pass. Other times gentle exercise in my joints can help keep the pain under control.

These flare ups are often misunderstood by people without arthritis, but for those with arthritis, its a way of life. These flare ups are unpredictable and yet another hurdle in life that arthritis throws at us. I hope that through awareness people become aware of these other side effects of arthritis and try and understand that arthritis is harsh and often unpredictable.

What does arthritis feel like?

When speaking to people about my arthritis they often ask what does it feel like? I find it hard to describe exactly how arthritis feels to me. It can vary from day to day and depends if I'm having a flair up that day or not.
Some days when my body is feeling stiff and achy I often compare it to having a nagging toothache feeling all the way through my body, often resulting me not wanting anyone to nudge or bump into me for the fear of pain.
I have been asked in the past about 'good days', this annoys me slightly. I cant walk on any day because of my arthritis, so I don't really think that I have a good day with my arthritis.
The worse days often leave me having to lay down because of the pain, often with a flu like feeling sweeping over the whole of my body.

I wish that I could explain better to people what it feels like to have arthritis, it may help the public perception of what it is to live with arthritis. I do feel that as arthritis is difficult to explain, and the extent of the disease can vary from person to person, people often query how bad it really is.

I am really pleased now, more than ever that people talk about arthritis and really bring it to public attention and raise awareness to it.

Being made to feel ashamed for being disabled.

Obviously, becoming disabled was not only devastating for myself but also my close family around me. Everything got turned upside down around me, no longer did I feel that I could protect my family or provide for them financially. Even though I had to give up my job, I was lucky that I didn't have any major financial commitments such as mortgages or loans at that time. My outlook on life had to change from planning and saving for the future to getting by and trying to have a half decent quality of life for me and my family.

Even now, a few years on, it can be hard to accept that it us unlikely that I will be able to get a mortgage for a house of my own, but instead having to rely on social housing. It can be very difficult to buy costly items as banks are reluctant to lend or offer other credit services to disabled people at this time.

Mentally it has been very difficult becoming disabled, but in recent months I have almost become ashamed of myself being disabled and have felt like a drain on society. Most of these feeling have stemmed from recent media and government comments and acts. We have been portrayed in the media as scroungers and are just lazy, where as in reality many of us are in a very vulnerable position where we have to just get by in life and don't know what the future holds for us.

At the moment the government are steam rolling through their Welfare Reform Bill, which in part are I agree with but on the whole am scared what it is going to do to some of the most vulnerable people in society. Do people honestly think that people with disabilities want to have to rely on the state for support?  Cuts are being made in all directions, many of which will hit disabled and vulnerable people hardest. These people will suffer and then things will become worse when they try to rely on services and charities that should be there to help, as they are also having funding cut so will not be able to help.

Thanks to this government, the future is looking bleak and scary for disabled and vulnerable people as well as the family around them. I fear that some people in society are going to face some severe poverty and suffering thanks to David Cameron and the coalition government. They should feel ashamed of the spin they have put in the media to encourage the public to dislike the fact that these people require help, at times this has made it hard for me to be seen out in public in my wheelchair in the day, as I was paranoid that people were looking down at me.

How being disabled affects my children and family activities.

As a disabled father I always worry about being an inconvenience or embarrassment to my three younger children. Even though they have only ever known me using my wheelchair or crutches, I always worry that they resent me not being able-bodied.

I always try to activities with them but often worry that I look foolish struggling to be the same as everyone else. Some days when I'm in pain I often sit in the car for a long time while the rest of the family go to places or take part in activities. My partner feels guilty when I do this but for me I would rather do this than my children miss out on something. Many places and attractions do make provisions for disabled people and wheelchairs, but at times this extra effort can sometimes make it feel like my disability is being highlighted. Majority of the time I try to ignore these feelings as I would feel bad denying the children something that they would enjoy doing if I was able-bodied. I don't know if everyone with a disability feels like this because often people tell me that I should be proud of trying to do everything that we do as a family.

My partner is always looking at ways that we can do things as a family without putting too much pressure on me or my body. She often gets frustrated as she feels that I should fight more for my rights as a disabled person, but again I just feel it embarrassing having to highlight my disability.

It is hard to hard to coming with terms that because of my disability I cant do everything in life the way I would like to do it. We still try to do as much as we can as a family even though it may have to be a bit slower and slightly different than other families.  I'm just really grateful that my children and partner have the patience with me and are willing to adapt things to enable me to be part of things.

My first feelings when realising I wouldnt walk "normally" again.

To say my journey through this disability has had its ups and downs is a massive understatement. My moods and feelings have changed drastically from hour to hour, often leaving me confused and paranoid leaving me feeling like I didn't know my place in the world no more.

In the beginning I didn't like to discuss my situation with anyone, including my partner who without doubt my closest friend. By discussing the issues meant thinking about the obstacles and issues me and my family would have to face in the future, and that scared me more than anything I have ever faced.

I felt real anger at people who were offering me advice, services or general help. This meant for a long time we struggled for a longtime as a family and me personally as an individual. People would often try and give me a shoulder to offload my troubles on, although this was a kind thing to do I found it patronizing and annoying. This attitude often cut us of as a family from any kind of support, although looking back on it a realising how selfish it was, at the time that was my defence mode again protecting me from the reality. The thought of admitting to needing help made me feel less manly in a way as I was a proud man who prided myself on sorting problems out on my own.

This is only a brief snapshot of how I felt at first, it is nearly impossible to explain those feelings in words (and not to bore you!).
It was the lowest time of my life, with my partner and children's support and love I am now coming to terms with things and starting to live life a bit more, although I still have a long way to go until I fully come to terms and adapt accordingly. Without my partner and children's support I doubt that I would be here today, many days the feelings of uselessness and inadequacy resulting in thoughts that it would be better for me and others if I wasn't part of the world anymore. Luckily I realised that I could still live a life full of enjoyment and experiences, just a bit different to how it was before.

Hopefully this blog can give people an insight into this kind of situation, many people young and old go through this each year, until it happened to me I was ignorant to this kind of thing, but now have felt all the feelings and emotions first hand.

"The future is literally in our hands to mold as we like. But we cannot wait until tomorrow. Tomorrow is now. "
Eleanor Roosevelt

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