Monday, 19 December 2011

It could happen to you!

I have to ask myself why no one seems to give a crap about the Welfare Reform Bill when it so could easily affect anyone at any point in the future.  If you get ill in any shape or form you will have your sick benefit limited to 12 months, that is of course if you are actually classified as sick enough to get it.  At the end of that 12 months you will be entitled to means tested benefits.  Now this sounds very reasonable until you discover that if your partner or parents, whoever is looking after you, earn more that £7,500 you won't get benefits. 

£7,500 pa coming into your household and you will not get benefits to help support you when you are sick, after the first 12 months.

What bit of this information doesn't anger you?  You pay National Insurance for this and you only get 12 months of ESA before being left to fend for yourself.  Now before you say that "both me or my partner earn enough to support our family after 12 months" I want you to think about some of these costs that arise when you are sick.
  • Additional heating costs because you are at home all day and unable to move around very much and your circulation suffers.  You really feel the cold so not only is the heat on all day, it is at a higher level than it is now.
  • Trips to see specialists in another part of the country costing £100s a year either in petrol, train or hotel costs.  You often have to stay in a hotel before or after the appointment because you can't manage the journey both way in one day.
  • A step to get into the bath, a seat for the bath, a handle to help you get in and out of the bath.  A perching stool to help you if you are able to manage cooking.
  • If you can't manage cooking, your food bill will go through the roof because your partner will be doing a full day at work then will come home and have to help you, and do all the household chores before thinking about cooking.  Believe me, your need for easy ready meals will increase significantly.  (Some people have to buy special food because of their conditions, or they will die.)
These are just some of the more obvious things that nearly all sick people will need to consider.

You think it won't happen to you.  I certainly didn't.  One day I was fit and healthy and the next I was in hospital having surgery.  I thought I would be back at work within a few months - 10 years later I'm still sick and NOT getting any better.


There are so many illnesses that you have never heard of that you could get.  There are many ways to injure yourself when you are otherwise healthy that can have a impact on you for the rest of your life.

You may not care what happens to people who are sick or disabled now, but maybe in 3 years time you will be sick or disabled, or someone you love will be.  Think about how you would cope if that happened and then think about the Welfare Reforms that will leave you high and dry.

Please sign this petition and then tell everyone you know to do the same.  This is going to happen in a couple of weeks time unless we can stop it. 

Please, Please, Please think about what WILL happen if you or a loved one got sick and then help us to get the word out NOW before it's too late.

Tuesday, 6 December 2011

Response to 38Degrees Email

This is a copy of the email I just sent to David Babbs, the Chief Executive of 38Degrees, a campaigning organisation.  They asked me to donate to them on a regular basis.  I won't be doing so.

Dear David

I'm afraid I won't be able to contribute to your campaign because I, and hundreds of thousands of people like me, are going to be plunged further into poverty because of the Welfare Reform Bill.  On top of the Welfare Reforms, agonising cuts have been made to social care and the Local Council level.  People like me are being left to lay in their own filth overnight in order to save a few pounds.  People like me are choosing to kill themselves rather than continue to struggle in a world that doesn't care enough to see they get enough food and heat to live.  People like me are facing the truth that they will be unable to cope physically and financially when the DLA changes to PIP are made, and acknowledging they will probably be forced to take their own lives rather than live in isolation and fear.

Essentially, David, people like me, people who are sick and disabled, will be ignored and forced to live in poverty and fear, because organisations like yours CHOOSES not to fight on our behalf.  You say that you fight on the behalf of the public, then I ask, why are you ignoring us?  I applaud your sharing of David Gillion's post on your blog, but for an organisation that is very keen on emailing it's members to ask for money, why didn't you share this post via email.  Our message is one that needs to be heard by as many people as possible.  At the moment, disabled campaigners feel very alone, without public support and even if you don't chose to campaign on our behalf, couldn't you at least tell as many people as possible that we exist and we are dying.  As a sick and disabled person I belong to the only minority group that ANYONE can become a member of ANY TIME.  No one expects to get ill, and would you want your loved ones to be hounded in the street?

So David, until I know that I won't have my benefits taken away from me at a moments notice, I will not be signing up to financially support your organisation.

Yours sincerely


Sunday, 4 December 2011

Suicide in the Disabled

Whenever I see news articles about court battles to allow the sick and disabled to have the right to terminate their own lives, with help from their loved ones, when they feel they can survive no more, I have mixed feelings.  On one hand, as someone who lives with daily pain I can understand when you are in constant pain, can't think because of the drugs you take, or communicate properly, when you are just a bundle of shrieking nerves trapped within your own body, I think everyone should have the right to decide if they can take no more.  On the other hand I get dreadfully worried, because once it becomes acceptable for the sick or disabled to terminate their lives it sets a terrible precedent. 

If it becomes acceptable for sick and disabled people to take their own lives because they can't suffer any longer, then is it acceptable to commit suicide because they are trapped in their own homes with no dignity, no heat and no food.  If there is no aspect of their lives that has worth and happiness because they are no longer getting the support they have been promised by the State and are having to lay in their own filth over-night because the local Council has decreed that it is not cost effective to have a care worker to assist them to the toilet, then do they become acceptable reasons for sick and disabled people to take their own lives?

Without the funds to pay for carers to help the sick and disabled to get out of bed in the morning, without the funds to pay for food and heat, without the funds to pay for mobility scooters, electric wheelchairs or taxis, what quality of life will be there?  I worry so much when I read blog posts like this one.  Where a disabled person bluntly and articulately states that when their DLA payments stop - because under PIP she won't be eligible, she will have so little quality of life she doesn't think she will be able to continue fighting through each day.

All over the internet are stories like Lisa's, blog posts and comments on campaigning websites about how, with the Welfare Reform Bill going through, they are scared that they will either die slowly, through lack of care, food and heat, or they can choose to end the suffering quickly, through suicide.  It is so wrong that these heartbreaking stories are flooding the internet and they don't seem to be heard.  Why does nobody care?  Being sick or disabled is something that can happen to ANYONE at ANY TIME.  Nobody knows when they, or a loved one, will become ill, or be in an accident.  I just can't comprehend why the public are being so short sighted, do they believe that if they had an incurable wasting disease they would be able to soldier on and perform a full week's work, every week, month after month?  No one knows how illness or disability will affect them.  Every illness and disability is different in the ways in which they affect the body, no one can predict how they will cope, until they suffer an awful tragedy, and that you wouldn't wish on your worst enemy.

I can't understand why this petition to ask the Government to stop and review the Welfare Reform Bill before the affects harm sick and disabled people, and their families, more than they have done already, has not had more signatures.  Do the public genuinely not care how the vulnerable in society are treated so long as they get cheaper petrol?

If you do care, please sign the petition and get your friends and families to sign it too.  Please forward Lisa's post to explain how the sick and disabled community are feeling, and ask how they would feel if it were their best friend, sister or mother who was writing it.  It could be any one of us writing that post, because it could be any one of us who got sick.

Thursday, 17 November 2011

ESA Part 3

I realised today that I hadn't told you about my adventures with the ESA Assessment.  I was scheduled to attend my assessment on the day before I went away on holiday.  As I said in my previous post, they originally rung me up to try and make the appointment for the one week I told them I COULDN'T attend. 

Anyway I managed to arrange the appointment for a day that my other half was on holiday, ie the day before we flew out to Cyprus.  We got there, managed to get a parking space after the third time around the block (and that was with a blue badge).  We got the wheelchair out and the OH pushed me up to the appointment.  It was a new wheelchair and neither of us was quite used to the width, so we managed to smash my hand on the door frame on the way in.  I was nearly sick with the shock of it.  In the end it didn't even bruise that badly, but at the time I was shaking with the pain.  I think nerves about the appointment contributed quite a lot to that level of shock, normally I would have brushed it off.

After I had sorted myself out, ie stopped shaking, we went to the counter to be told they couldn't find a record of my appointment.  Ten minutes after looking into the matter I was told that the appointment had been cancelled.  They hadn't bothered to tell me.  Apparently they had requested some more information from either the hospital or my GP and the file was being looked at by someone at head office.  They couldn't carry out my assessment without my file.  I was told that they might be able to carry out my assessment in my home if the analysis of the file indicated that I needed it.  I actually didn't want my assessment at home.  Home is where I lock out ATOS and the DWP.  It is my refuge.  I can't understand why they would schedule an assessment without having all the information they required.

I was so angry about having to go to an appointment that they had cancelled without letting me know.  I was angry that it would be still hanging over my head when I went on my holiday and I was angry that I had used valuable energy that I would need for the next day for the flight.

After a few weeks had gone by, I got a letter telling me when a doctor would be attending my home.  It only gave me about a 10 days notice.  It was a week when my OH was away with work.  It was a bad week, as I always struggle to cope when he is away, but I just wanted it DONE!  Fortunately, my Mum was planning on visiting that day on her way back to York from her friend's house.  She left an hour or so earlier than she planned so she could be there when a strange doctor came to my house to assess me.  I was glad she was there because it was a male doctor.  He was very softly spoken and gentle, but he was still a male doctor visiting a female in her home. 

I'm not sure I'm comfortable with that situation.  It is one thing to be alone in a room with a male doctor, being assessed in a Centre where people are nearby, it is something completely different being isolated in your home.  He was a nice man, and I had my Mum with me, but what if he wasn't a nice man?  What if he was the sort of man who got off on feeling powerful and in control of your future benefit payments? 

I didn't specify that I wanted to see a female doctor because I assumed I would be going to the Assessment Centre and I would have my OH with me.  I didn't ring up to question it when it was moved to my home because I knew I would not be alone, but what about people who are vulnerable and just believe that all doctors are "good people", and they didn't need to protect themselves.  I just think it leaves too many opportunities for vulnerable people to get hurt.  I'm not saying there will be any people who get hurt by this system, but it leaves that opportunity open for people who would be tempted by it.

You never feel more vulnerable than when you are sick, isolated and are being assessed to see if you are "deserving" of Sick Benefit.  I don't like that ATOS can leave you even more vulnerable than you already are.

I'm still waiting to hear about my assessment.  I don't know which group, if any, I'm allocated to.  I hate this waiting.  I hate that it is hanging over my head like this.  I just wish they would hurry up and DECIDE!

I'll let you know what happens next.

Wednesday, 14 September 2011

Twin Streams

If you watched Doctor Who this weekend, in the UK, you will have seen two Amy Ponds. One 36 years older than the other. The older one has to help rescue her younger self and by doing so, eliminate herself from existence. She didn't want to do it because doing so, would invalidate all she had accomplished and all that she had suffered and learnt.

This is one those impossible moral quandaries that can be discussed eternally, where the damaged profess that they wouldn't change the past, because without it they wouldn't be the person they are today. I agree that if I hadn't got ill I would probably be a different person, but I certainly don't think that person would be someone that I wouldn't want to be.

This weekend I was at a party. It was the 2nd birthday of a very sweet young man. I was surrounded by lively children and their parents. I looked at all these people who I met just before I got ill. They were all impulsive types, who travelled the world and partied hard, and now they are mostly parents who have laid their reckless activities more or less to rest.

Over the last 11 years I watched these wild friends travel and change and grow. I watched them start to take their careers seriously, buy houses and get married. I watched them get pets and then decide to have kids. I watched them mature and change, and they didn't have to endure 10 years of unending pain to do it. Life took care of it. They got older and wiser and had fun along the way. I can look at my friends and see who I would probably be, without all my suffering. I would be different, but not by much, and I wouldn't have had to rattle with drugs to get there.

So when older Amy has to choose between an existence of suffering or to have never lived that life, I would tell her, "save your young self and choose the path of less pain. Just because it's easier, doesn't mean it is wrong".

But in life we don't get to chose which path we take with the benefit of hindsight. We just take each choice as it presents itself. In real life we don't get to see the future consequences of each decision we make. That is the real reason we say we wouldn't change a thing, because it is impossible. I can't wish for something that might have been, because I will never have that. To waste my energy and sanity longing for normality, is not something I would do. So maybe that is what we mean, us damaged and battered people, when we say we wouldn't change a thing. Maybe what we really mean is that we accept we cannot change a thing and that we are just going to take each choice as it appears and face the consequences of those choices.

Tuesday, 6 September 2011

I got me some love!

I would like to thank Tink from Master of a Thousand Things, for sharing the love in her recent post.  She nominated this blog for the Liebster Award.  The Liebster Blog Award is all about helping blogs that have less than 200 followers extend their readership.  It is about promoting your fellow blogger by recommending them to your readership and vice versa.  If you like a blog, it is likely that you will like what the author likes and therefore a recommendation will mean that much more.

I have received this award before, but it was for my other blog, Stitched Together.  In some ways the award for this new blog means that much more.  This blog was quite hard for me to start, but I'm so glad I did. 

I didn't used to talk much about how my physical condition directly affected my life as I wanted to spend my time with the people I care about, enjoying myself and not talking about painful and hard subjects.  I have come to realise that it is only because people, like myself, don't want to spoil the nice moments they get, that those with good health don't know about the realities of life with poor health.  I decided that if I stayed silent, then the Government wins.  They can smile and slash our income and no one will object because they don't understand the effect it will have on the lives of all the sick people.  I have started telling people about those realities and I started this blog.  I don't want to be a health and politics bore, but these are important times that we are living in.  I don't want to be someone who sits back and lets others fight on my behalf.

If the current Government has it's way, during the next few years we won't have a working NHS, we won't have adequate social care, and the rich will be rubbing their hands together with glee because their taxes haven't gone up, to pay off the deficit that was caused by bailing out the greedy banking sector, and it's open season on all those lucrative Government contracts.

I can't stand idly by and watch the coalition demolish this country, that may not have always got it right, but certainly tried to.  My blog is my small way of joining the fight to enlighten the people who believe the "Scounger" headlines and the grossly misleading statistics released by the DWP.

Part of receiving the Liebster Blog award is sharing the love, by linking back to the person who nominated you and nominating another 5 blogs with less than 200 followers.

Here are my 5:

My first recommendation is HS and Me.  This is a new blog set up by A Girl in Winter.  I have read A Girl in Winter's blog pretty much since I started blogging.  She is a fellow lover of books and craft addict.  I didn't realise until earlier this year that she was also someone who struggled with health issues.  HS and Me, is her new blog about her health, that is very interesting and honest.

Another fellow crafting blogger Anniebead, has also recently set up her health blog about Living with Arthritis.  Both of these first two recommendations introduced me to new conditions.  I think that there are so many illnesses that are not publicised, and therefore people don't know that they have them, or what to do about them, so I encourage you to check them out, if only to learn something new.

Helen from Humanity before Hatred is another person trying to spread information and honesty about life without perfect health.  Helen is also a cartoonist of great talent!

Another fellow British angry and sick person, Steven from Tentacles of Doom, shares my passion for stopping the seemingly inevitable march of the current Government into a almost completely capitalist state, where the ill, the old and poor are shunted off the cliffs of Dover and pointed towards France. (oops sorry did that sound bitter??)  Steven's blog is full of details and quotes and links to other sources to back up the arguments that he makes.

The Broken of Britain blog just tips over the 200 followers mark, but I have included it anway, because I wanted all my recommendations to be about promoting the awareness of the realities of living with sickness or disability in Britain today.  There are many people who contribute to this blog, and it was one of the first places I became aware of the scale of the battle we are fighting.  It was this blog that told me about the 20% cuts being made to the benefits paid to the people with the worst health.  It was here that I heard about the new NHS bill that removes the obligation for the UK to actually HAVE an NHS, and it was here that I learned that I wasn't alone in being angry and frustrated with the way we are being treated, so that is why I have snuck this one in!

So once again, thank you Tink, for promoting my little blog.  I greatly appreciate it.

Monday, 5 September 2011

ESA Part 2

As I expected, I got a phone call from ATOS Healthcare asking me to come in for an assessment.  On my application form I listed the one week I would NOT be available for an appointment, and the date suggested for my appointment was guess what? Yes, right in the middle of that week!  What I pointed this out, an apology was made by the caller saying "oh yes, I hadn't read that".  I have to ask if this is the attitude about the rest of the form.

Another date was suggested, for the Tuesday after I get back from my holiday.  I apologised and said there was no way I would be in any kind of fit state to go anywhere for about a week after I get back - as when I go away with my other half, I pay quite a high physical price for my mental and emotional relaxation.  In the end we settled on the day before we leave.  My other half already had taken the day off work, so he won't have to request more holiday to help me get there.  At least I know that the building is wheelchair accessible, unlike some ATOS Healthcare Assessment Centres.

I'm glad that the assessment is coming before the holiday as I think if it was afterwards I would have spent the whole time I was supposed to be relaxing, actually worrying myself sick(er).

One thing that annoys me, is that at no point in all the paperwork and phone calls was I told I could ask for the assessment to be done in my own home.  I only knew this was a possibility because my friend was assessed for DLA many years ago, and she was able to have her assessment done at home.  When I was phoned by ATOS to tell me that ESA application form was being sent to me, I checked to see if I could have the assessment at home and I was told I could request that.  What I want to know is why are we not told that in writing and why did I have ask if it were possible?  Personally I don't want ATOS in my home.  My home is my refuge from the Government, ATOS, the NHS and the ilk.  Fortunately, I have a partner who is willing to transport me via car then wheelchair to my appointment, even if it had meant taking an extra day off work, in order to satisfy that need.  What I want to know is why is this option not publicised more?  I know that some people worry themselves sick about getting themselves to assessments and causing themselves more pain than necessary while they wait to be seen.  I have to wonder if it is because ATOS think the "really sick ones" will request a home visit, not caring that the really sick ones don't know it's an option and so put themselves through hell and back to go to an appointment.

I'll let you know how the assessment goes.

Wednesday, 31 August 2011


Well, last week I finally posted off my ESA application form.  All 20 pages of fun and frolics were finally completed in my teeniest and tidiest handwriting, so it would fit in the boxes.  I made sure that when random questions were asked, I answered them as fully as possible.  For instance, there was one question that asked "can you go up and down two steps, with a rail, unassisted" to which the correct answer is yes.  However, the full answer is "yes, but I can't move my wheelchair or rollator up or down those steps, so when I get where I'm going I can't actually move any further as I do not have my wheelchair or rollator."  I would imagine that is a very common answer on this form!  It just seems so limited in scope when illnesses are so wide in their effects.

I hate filling in DWP forms at the best of times, but I found myself particularly hating this form.  I think it is because of what it represents, that if the Government has it's way I will have my benefits withdrawn from me, simply because my partner earns too much.  In theory this is fine.  I won't starve, I won't be homeless, I will be warm and clothed - but I will be completely and utterly dependent on my partner for EVERYTHING

Currently my partner pays the mortgage, the bills and most of the food shopping.  He pays for holidays and little extras, like my new tyre for my mobility scooter and my new rollator.  He also shops, cooks, cleans and drives us everywhere, pushes me in my wheelchair and generally worries about how I'm doing.

When I have no income at all, I will have to go to him with my hand out to request money to pay for a haircut, or some new shoes.  I will have to ask him if he minds buying me some shampoo or deodorant (and praying he buys the right one).  I will have to ask him to pay for me to go out for lunch with my friends, on the rare occasions that is possible.  In short, there will be no element of my life that is independent from my partner.

I hate that idea.  There will be nothing that I can manage without my partner being involved on some level.  That is a horrific weight to have on a relationship.  It is hard enough knowing that he has to manage all the physical things in our lives, and that he has to keep earning a good salary so we can continue to live in our home and run our car.  To add that extra burden to him, of knowing that without him, I would be completely stuffed, both physically and financially is so unfair.  To make me completely dependent on someone else is unfair too.  It is horrible to go, like a child to a parent, for "pocket money".  It just feels wrong and I know I won't do it.  I'll just go without, unless it is essential.  I will hate asking for money.  It was hard enough applying for the benefits, that I had contributed to, by paying National Insurance and Income Tax for 10 years.  Going to someone I love and asking him for just one more thing feels impossible.  He already gives me so much. 

The anger making thing is, he also pays his Income Tax and National Insurance, and he's expected to pay out more because he chose to share his life with a sick woman.  It would certainly make a lot of people think about getting involved with a sick or disabled person if they knew they would have to support them, without aid from the Government, for the rest of their lives.

Tuesday, 9 August 2011

Feeling Trapped

This weekend I had another reminder how life just gets more difficult when you can't walk very far.

I was visiting my in-laws, who had a local music festival going on.  We had arranged some time previously that we would go, and tickets had been bought and arrangements made.  We travelled down the day before so I could rest adequately for the big day and I decided that I would go for two sections of the event.  I would go for lunch when it started and stay for a couple of hours to sit in the sun and enjoy the festival atmosphere and then go back to the in-laws for a rest.  I would then go back for the last couple of hours between 8-30pm and 10-30pm.  That way I would get to experience the whole nighttime and headline atmosphere.

Can you imagine my dismay when we unloaded the scooter from the car and found I had a puncture?

The other half quickly leapt into action calling round several mobility shops in the area, to find none that could help us.  While this was going on I was so upset I had to go inside and take some deep breaths.  I was so angry at this simple puncture because it seemed to sum up everything about my life that is extra hard.

It took a great deal of soul searching before I bought the mobility scooter.  I didn't want to do it and my other half didn't want me to have to do it, but after we moved into this house, my health deteriorated and I found I couldn't get to the corner shop.  We live on a hill you see.  Going down a hill isn't that hard for me, but coming back up again, that is impossible.  Without a mobility scooter I became trapped in my own home.  If I wanted to go anywhere I had to ring for a taxi or ask for a lift.  With the scooter I could go to the doctors, buy a loaf of bread and even get a haircut, without having to ring for a taxi.  I could go out on a whim, you know, the way healthy people do.  I decided to get a scooter and once I had it, I knew that I could never manage without one again.

Having a puncture at the weekend meant my in-laws having to drive me to the festival and back.  They had to wait in for me to call and tell them when I had reached my limit.  When I reached my limit I tried calling and there was no answer.  In the end my other half had to walk back round to the house to find that his mother had taken her hearing aids out and hadn't heard the phone, while his father had popped out for a bit.   She had forgotten to put them back in when he went out, and that is why she missed my calls. By the time I eventually got back I was in a foul mood because I had to rely on other people and they had to adjust their day to accommodate my health, and it hadn't even worked properly.  I was also in more pain because I had stayed longer than I intended and had got myself worked up and angry.  I never did go back to the festival to enjoy the headliners.  I think I knew that if I had rely on the in-laws I would be worrying about being stranded again because of some strange and unlikely coincidence.

So whilst my whole weekend wasn't ruined by the puncture, it certainly limited my enjoyment, and probably increased my pain levels due to pacing inadequacies and stress.

Everything in my life is so much harder than it would be if I was healthy.  I do believe that most things can be achieved if you apply a little lateral thinking and clever scheduling, but quite often it also includes applying money to the problem, like buying a scooter or paying for taxis. 

I finally got my scooter tyre inner tube replaced today.  The scooter repair people came out the day after I called them.  I am now mobile again.  It cost me £48 to get my freedom back.  I only had one day of being stuck at home with no way of getting out, but it reminded me of all the things I hate about being trapped in my house, it feels a little bit too much like being trapped by my own body.  It's another example of why it is so expensive being disabled.  I think most of that £48 cost was call out fee.  Because I am disabled, someone has to come out to me to fix the scooter.  It fills me with horror what would happen if I didn't have the money to repair the only thing that gives me true freedom. 

I feel guilty for feeling so frustrated and angry at my situation when I have the benefit of a supportive partner, family and friends and mobility equipment that helps me and is repaired when things go wrong.  But, whilst I know that lots of people have it worse than me, I can only tell my story and how my disability effects me, and this really made me upset, so I'm sharing it.

Tuesday, 19 July 2011


On the whole, I deal with my chronic pain and the problems that my pain causes, pretty well.  I have good coping mechanisms and methods of ensuring I can get out house at least once a week.  I have people I can talk to and have fun with and I have my creative outlets that fulfill my sense of purpose.  The trouble is, about every 12-18 months I tend to get an overwhelming sense of futility.  I look at my life and all I can see, every day, disappearing into the distance, is the grinding unending pain that makes me a captive inside my own body.

All I can see is a drug fogged brain, being held back from achieving all that it could, and a body that does not fulfil the needs of anyone.  I look inside and I see is a great big black hole where my life should have been.  I'm 38 and I've been ill for nearly 10 years.  I look at my friends who have careers, or families or both.  I look at my partner who can walk into town if he chooses on a nice day, but often doesn't because he feels guilty about leaving me behind.

I look at the plans we have made for a wonderful holiday in Cyprus and all I can think about is how much I resent having to make all these additional plans for coping, so we are able to enjoy ourselves a bit more than usual.  I resent that we can't go on the adventurous holidays that my partner went on before we met, when he travelled to the Amazon, India and Nepal and round Vietnam staying in villages that saw a white face about once a year.  I wanted to be able to join him on his adventures, and I can't, and probably never will.

I had such hopes and dreams when we first met.  I longed to travel with my partner, to go to live music events, getting muddy in fields at festivals and going on adventures without plans and having no purpose except to explore and learn and enjoy.  We started on this exciting life until 6 months into our relationship when everything started coming apart.  Our exciting life was put on hold when I had my ectopic pregnancy.  A few months after that, we went on our first holiday, just a last minute package deal to Greece, but it was wonderful.  We weren't able to do all the things we wanted to, because I still wasn't properly well, but we thought it was the start of our life getting back to where we wanted it to be.  But it wasn't.  Things just started getting worse and worse and they never really got better.

I look back at all the dreams and hopes I had during that first year together and I weep because they were never achieved.  I feel that as well as letting me down, my body has let my partner down.  He never had his travelling companion.  He has always had to be my support and guide.  He has to walk down pathways before me to see if I can manage to get down them in my wheelchair.  He has to push me over bumpy ground and go out to get supplies when I can't leave my hotel room because of the pain.  He daren't leave me on my own for too long if he goes exploring on his own, because he worries that I might not be able to manage on my own in a strange place.  I look at all the restrictions my body puts on both of us and I hate it so much.  I hate that it won't do what it is supposed to do.  I hate that I can't escape, not even for a day, and my partner has to watch me fighting to keep my head above water.  He has to watch my pain and my struggle to stay sane through the dark times of resentment.

I know that my sadness and hate will leave me, eventually.  I don't know how long it will take me this time to climb out of my pit of despond.  I just know that I have to keep getting out of bed each day.  I have to keep getting dressed and washed.  I have to eat and talk to people when they talk to me.  I have to pretend everything is ok until it becomes ok again.  Sometimes, you just have to fake acceptance until it sticks.

Saturday, 9 July 2011

Going on Holiday

This weekend my partner and I sat down and started researching holidays.  It's a huge thing to do when you have ill health.  Our trip to Turkey last year was our first foreign holiday since 2001.  It was a massive leap of faith to try and do it and we learnt a lot from our experiences.  We hope that these lessons will enable us to have a better holiday this year.  I'm sure we will make mistakes this time round, but at least they will be different ones!

As I just about managed the 4.5 hour flight to Turkey last year we have set this as our upper limit for air travel time, as I have surgery since then.  I was miserable after both flights last year, but I'm hoping since the surgery I will be less miserable on this length of flight, but I'm not holding my breath, and packing my heat pads and TENS machine.

We have settled on a holiday to the Greek side of Cyprus, as the Blue Badge will be valid there and we plan on hiring a car for the whole week.  Last time we only hired it for one day and had to rely on taxis the rest of the time.  It should be relatively easy to drive there as they drive on the same side of the road as we do in the UK.

We have decided against a package deal as we want greater control over the place we will end up on arrival.  In Turkey we stayed in a big fancy hotel with lifts, swimming pool and gardens and a bar.  It was miles from anything else and it restricted us so much.  We want to be somewhere that is close to shops and restaurants, so my partner can push me more easily in the wheelchair. We have also decided to go self catering so I can just stay in the apartment if I'm feeling rotten and will still be able to get food and drink without going on a huge hike through the hotel. 

We had to do some very in depth research to find somewhere that would work for us.  We settled on Peyia which is a small town outside Paphos, that is close to the coast.  It looks lovely, if a bit hilly. We are taking my wheelchair, which we will be able to fold up into the boot of a hire car, but we have also found a great service.  It's called Paraquip and it rents out all sort of living aids and mobility equipment.  They even deliver and collect free of charge from the area we are going to be staying.  We plan on hiring a mini scooter that we can fold up into a car boot.  This will give us the option of using either the scooter or wheelchair on day trips.  I'm thinking that the scooter will get used more, as I prefer to be self propelling and to be more in control of my direction.  The scooter will also enable us to go out more easil,y round and about in Peyia to the lovely looking restaurants and shops.  I didn't really get to do any wandering or wheeling around in Turkey.  I love doing that, and I couldn't.  Being in a village, rather than a city, will hopefully make everything much less spread out.

We have found a great looking apartment to rent through a lettings website and have checked through email that the apartment has lift access.  The photos also show nice padded chairs and sofas, including padded chairs on a terrace so I should be quite comfortable in the apartment, which is really essential.  There is also a pool to laze around that we share with the other apartments in the complex.

We located the complex on Google Maps and worked out how far it was, using the map scale, to the town centre.  We completely underestimated the distances on Google Maps last year, which is why we were so cut off from everything in our leviathan of a hotel.  This time we pulled up maps of our home neighbourhood and the area of the holiday complex and compared the distances against familiar places.  We think we are going to be approximately 200-400m away from the town centre, which is great.

We also have to get specialist travel insurance to cover the wheelchair etc and any medical costs.  We used Travelability last time.  If anyone has any other recommendations they would be gratefully received.

Whilst all this is very exciting to be organising, it also incredibly expensive.  We have so many additional costs that the able bodied don't have.  There are so many other things we need to think about, like informing the airline about my physical requirements etc.  It was much easier in 2001 before I got really ill.  I only had pain around my periods then, and we timed the holiday just right so that I didn't really have any mobility issues.  I got tired and sore if I did too much, but that "too much" marker was a lot further away then.  Too much was after a long day trip that involved going round some caves, a trip on a boat and round a small island, plus some shopping.  We just rested up the next day and then I was fine again.  I can't tackle anything like that now.  In fact all of what I experienced in that one day is probably what I'll manage over the course of a week.

I'm just excited to be going somewhere different, where the culture is not my own, where the food is interesting and the weather is warm.  That's all I need to make me happy.  That is what most people need to be happy.  I know how incredibly lucky I am to have a partner who can afford to pay for all the additional holiday expenses.  Not many people are as fortunate as I am.  If we had to rely on just my benefits, as most sick or disabled people do, there would be no holiday, either abroad or in the UK, ever.  It would be one day after another of the same tedious, painful grinding existence.  Everyone needs to get a break from their everyday existence and it's even more important when the everyday is so difficult.

Whilst it does require more effort and greater cost to organise my holiday, than it would if I were fit and healthy, I can't complain too loudly about it.  I am getting to visit a lovely and interesting part of the world, when so many of my counterparts never get to experience anywhere other than their own four walls.  If you are poor, but healthy, at least you can go camping!  When you are poor and sick, you can't go anywhere.  I can't believe that I didn't think about these things when I was healthy, but that's the problem isn't it?  No one thinks about these things until it affects them directly, or someone close to them.  It's so easy to take holidays for granted.  That's never going to happen to me again.

Wednesday, 6 July 2011

Just a bit of imagination

Today we all got the news that a local authority, Royal Borough of Kensington & Chelsea, and the Supreme Court, think it is quite acceptable for someone to be forced to use incontinence pads when they don't have to, in order to save money.  Apparently the argument that incontinence pads are safer and give greater privacy than getting up to use a commode, actually holds weight in Britain today.

The individual involved in this legal battle, Elaine McDonald, is not incontinent.  She can control her bodily functions but she does need to empty her bladder several times a night.  This former ballet dancer, who once ruled her body with strength and grace is being held hostage not only by the devastation caused by a stroke, but by her own Local Authority.

Whilst I applaud the coverage of this legal battle on the news, I find it terribly sad that this case is the one that is being covered on prime time tonight, when I am sure that there are other equally disturbing cases not being covered because the individuals are less sympathetic.  This woman was obviously fit and had great control of her body, how sad it is that she can no longer use it the way she once did.  The media can show shocking before and after photographs that gain sympathy.  It seems that the news broadcasters feel that the elderly are of more note to the British public, than the sick and disabled, or maybe I'm doing them a disservice, after all, it was Age UK that assisted in taking this case to the Supreme Court, not the BBC.

I was discussing, with my partner, yesterday the lack of interest in the treatment of the sick and disabled and he stated that it was because no one believes it can happen to them.  Everyone knows they will definitely get old, but no one believes they will ever get sick or end up being cared for by others.  I hate to think that our nation really is filled with individuals with such feeble imaginations.

At what point do the fit, young and healthy realise that one day they could get hit by a bus, have a disabled child or suffer a stroke?  Do they think that we knew this would happen to us, or that we brought it upon ourselves somehow?  It could happen to them and it could happen to them tomorrow.  They never know when their health will fail or when an accident can happen, as those on this side of the fight know.  Old age may seem a life-time away and something that you can prepare for later, but accidents and ill health happen, and are rarely planned for.

I just wish it were possible to convey the humiliation and horror of not being able to get to the toilet without assistance, and then to be told that you could no longer have that assistance.  How do we awaken the imagination of a nation and help them see what it is like to live in a broken body, and what it would be like for them, if their bodies were broken too?  Maybe if they could imagine for just one moment what it could be like, the young, fit and healthy would join us in our fight to be treated as equal citizens, with a right to dignity and a means of support.  Maybe if Jude Law and Sienna Miller were in a film about it, we would gain more sympathy and respect.  I do hope that this is not our only hope, but if it is, does anyone have their email addresses?

Sunday, 3 July 2011

Odd Week

I have felt very strange this week.  I have been more than usually resentful of my rubbish body and my limitations.  I normally have quite a good handle on what I can and can't do and this week I felt like ignoring all of my experience for some bizarre reason. 

I had two appointments at the start of the week that I had no choice about cancelling.  The first was an appointment with my consultant on Monday, and the second was my Pelvic Pain Support Group on Tuesday. 

My support group is in the process of being wound down.  The woman who normally facilitates the group is on maternity leave and she has not been replaced, so other employees are having to pick up her work.  Instead of having a monthly meeting we were having a meeting in June and one in September and then no more, even when the normal facilitator comes back.  I am really angry about this.  Apparently because the group is not a "treatment" with a finite end to it, they don't want to fund it anymore.

The stupid thing is that if this group had been made advertised more effectively and been made to work properly, as a form of counselling and a way of teaching coping mechanisms then this could have been made to work as a form of treatment.  Instead sufferers of pelvic pain are left to fend for themselves or to try and get individual counselling, which is nigh on impossible.

As the group is being wound down, the only reason I have gone to the recent meetings is because I know that it helps the others if I am there.  I am getting nothing from the meetings except an overwhelming feeling of rage and frustration that our NHS is being dismantled.  The group may not have worked properly, but if it is running there is a chance of being able to correct it and get it helping lots of women.  If it is cancelled, then who is is helping?

One of the women in my group did not even know about the changes in the welfare system.  She had no idea that she is probably going to lose her money.  She struggles financially as it is, as she has hospital appointments all around the country, with various specialists.  She can't travel on her own, so her husband has to take time off work to take her and the travel is incredibly expensive.  They are trying to manage as best they can on the money they have, which includes incapacity benefit and they are still struggling.  When that money is withdrawn, my friend will not be able to get her hospital appointments.

I think, with hindsight, this meeting filled me with massive amounts of negative energy that I wanted to expel.  Instead of resting up after the meeting and doing something positive like knitting or sewing, I went shopping, for the first time since the op. 

I bought some nice things, but I didn't have to do it the way that I did.  I could have been sensible and accessed the shop mobility scheme and got around town on a mobility scooter.  Alternatively, I could have asked my partner to take me shopping at the weekend and have him push me round in the wheelchair.  I decided to do neither of those things and I am still paying the price of my anger and frustration.

I made the mistake of trying to walk around some shops.  I stupidly entering a shopping mall to get something to eat.  I knew I wouldn't be able to get out unless I walked for what I knew would feel like miles.  I had to stop at every available bench or perch. I KNEW I couldn't walk that far.  I KNEW it would make me fall over for days, if not weeks, and I did it anyway because I was so angry at the world and my body that I decided to punish it.  I pushed myself beyond my limits and I am still paying for it. 

My body is rebelling.  I don't blame it.  I was stupid.  I wanted to do things that I used to be able to do, because my world is falling apart and my place in it is uncertain.  It is so stupid because the only person I am punishing is myself and the people who care about me.  These are the people are getting less of me because I was angry at my body.  It was stupid and childish and I should know better.

I know that I am lucky that my partner earns enough that if I lose my benefits we won't starve, we won't lose the house and we will still be able to afford heat and light, and to continue to run a car.  Instead of being relieved about my own good fortune I am getting angry and I am grieving over everyone else's struggles.  All the people I have come to know through the internet or my support group, or the people I see in the hospital waiting rooms, it is them I am angry about.  They need someone to fight for them, because most of them don't even know that this going to happen, like my friend in the support group.  These changes have received so little media coverage that most people who struggle to get out of bed every day are going to received a massive shock.  They will open a letter in a few months time telling them that they are going lose a massive proportion of the income that is coming into their households.  Can you imagine the devastation and the despair that will cause?

So all of these feelings have been bubbling under the surface and instead of taking them out and looking at them and dealing with them like a grown up sensible woman, I decided to push my body beyond it's endurance on something as STUPID as shopping.  It wasn't for a family member, or a dear friend.  It wasn't for my partner or any other valid reason.  It was because I was angry and frustrated about my limits, so I decided to ignore them until it was too late.

So all in all, it's been a bit of an odd and angry week.

Tuesday, 28 June 2011

Getting Me Off the Books

Over the last 12 months I have had two different NHS teams try to discharge me.  I managed to avoid it in both cases, but it did make me wonder that if I was less belligerent what would have happened to me.

The first discharge attempt was made Spring 2010.  I had managed to control my periods with a contraceptive pill, that I can take indefinitely without worry of side effects.  This resulted in my gynae consultant telling me that my Endometriosis was controlled and therefore I should be discharged.  At this point, I spoke up and told him that when I said I was doing ok, what that actually translated as was that my pain levels were kind of controlled and weren't growing as fast.  I also told him that I was still taking lots of pain killers and therefore, by my accounting, I wasn't fixed by a long shot.  The consultant, somebody who's care I'd been in for around 9 years, listened to me and kept me on.

When I went back 6 months later, my adhesions were causing me all sorts of trouble.  I told my consultant that I needed surgery and I needed it now.  The pain was not controlled, in fact it was unbearable, and on top of that I could feel tearing inside when I had a bowel movement.  Instead of saying to me "let's book you in for surgery" my consultant surprised me by saying he didn't want to do it.  He wanted to transfer me over to an adhesion specialist.  I wasn't surprised about this, as the last time he had removed my adhesions it had taken him 5 hours.  He was afraid that he would harm my innards and I, for one, was pleased he had admitted defeat, even if I wished he had done that sooner and referred me to the adhesion specialist when the Endo was controlled.

My (soon to be ex) gynae consultant wrote a strongly worded letter to both my GP and the laparoscopy specialist he wanted me to be transferred to.  He couldn't refer me directly.  My GP had to do that.  How crazy is it that a very senior surgeon cannot refer to other specialist but has to go via the GP.  As a result of the strongly worded letter I got in to see my new consultant quite quickly and I got surgery this April.  In a space of 12 months I had gone from managing ok to requiring urgent surgery.  My bowel had become twisted and was wrapped in adhesions, which was why I felt tearing inside.

I was quite surprised when I went for my post surgery follow up, to be told that I was going to be discharged to the care of my GP.  I was also told that the new pain I was experiencing was probably just the scarring from the surgery settling down.  It was very unlikely to be adhesions.  I didn't argue with him on that point, as sometimes doctors just won't be told by a patient that they are talking out of their backsides.  I know my body and I have had this type of surgery before, I know what adhesions feel like and I know last time I had this surgery, adhesions were starting to form within a couple of months of the surgery.

Instead of arguing about the adhesions, as I wasn't going to ask him to do anything about them yet anyway, (there is no other treatment apart from surgery and with every surgery there is more risk of adhesions) I argued against being discharged.

I pointed out that my last situation had escalated very quickly and I wanted to be able to contact the department immediately and request an appointment, rather than trying to make an appointment to see my GP, get them to refer me and then wait for an appointment with the specialist.  I argued that I had never pushed for unnecessary treatment and that when I requested it, I invariably got knotted insides that resembled a basket of yarn after three kittens had played with it for a couple of days.

I won my argument.  I am staying in the system with an appointment set for 12 months time.  I'm hoping I will be able to postpone the appointment when it comes around but I want to know that it is there if I need it, and that I don't have to fight with my GP to be referred to the correct department.

Sometimes you have to know which battles to fight.  I know my own body and don't think the doctor was correct when he said adhesions couldn't be reforming.  But if I had pushed the issue he might have thought I was a hysterical patient craving attention.  Instead I dropped it and pushed in a rational and calm manner to stay on his books.  5 years ago I would have been emotional and upset that I was being ignored and being cast aside.  Now I know to go to an appointment with a plan of what I want to achieve.  I know what battles to leave and which ones to fight.

If I hadn't fought to stay on the books of my gynae consultant I may have had to fight my gp for a referral and I might have been referred to a less experienced surgeon.  Instead my gynae consultant shortcut the procedure by a few weeks.  I wish he'd done it months earlier but at least he knew me and my history and took me seriously when I told him I needed surgery and I needed it now.  I just hope that I can build up a similar relationship with my new consultant.

It does make me worry though that  many people are thrown back at the GP before they should.  I know that it is better to have people off a waiting list, but does it cost the NHS more for a patient to be able to ring a specialist in their condition for help.  Why is it better that a patient's first port of call is a GP appointment, which at my practice is nigh on impossible to get, to see someone who doesn't understand the condition fully?

Friday, 24 June 2011

Disabled Parking

Yesterday I took a stand.  I stood in my local convenience store, which is actually a Tesco Express, with a Petrol Station attached, and asked a question loudly, while people were queuing behind me.
I said, "Does that Golf parked outside belong to a member off staff".

The checkout guy replied "yeah - it's hers", nodding at the young woman serving at the next till.

I turned to face her and loudly stated "Did you realise you are parked halfway across the disabled bay?"

"I had to park there, the car next to me was parked halfway across their space," she replied defensively.

At this point I was feeling a little faint at my audacity at tackling someone in a shop full of customers.  Though with hindsight that could have just been the pain from standing up so long.

"Well, you are stopping people, who are disabled parking there," I continued.

"Do you want to make a complaint to my manager?" she spat at me. 
I was gobsmacked.  She was angry at me because I had the temerity to ask her - a member of staff - to move her badly parked car.  The car that was stopping disabled people being able to park next to the shop, and use the store where she worked.  This space is hard enough to get into at the best of times, because people stop across it to get money from the cash point, or because they are "just popping in for pint of milk".  Big loading trolleys are also left out across this space.  I have actually complained about the trolleys to the manager and I was assured it wouldn't happen again - yeah RIGHT!

This store has around 15 parking spaces ranged around the outside of the petrol pumps.  Outside the garage there is a quiet road, where it is easy to park on the street.  These places to park only require a 30 second walk, but rather than use any of those places, this member of staff had chosen to park halfway across the disabled bay, and didn't see anything wrong with it.  Not only did she not see it as a big deal, she was angry at me for pointing out that what she was doing was wrong.  I know she was embarrassed at being told off in public, but I could see she was really angry at me.  I felt the only thing stopping her from letting forth a torrent of verbal abuse was the thought of losing her job.

After being challenged about whether I wanted to make a complaint about her, to her manager, I felt that getting her into trouble wasn't going to solve anything.  I had also reached my standing up time limit and was about to fall over, so I just asked her to move the car.  I'm hoping the shame she experienced, in front of all the customers, might make her think about parking there again.  It might make those customers think again.

I feel so weary sometimes about this constant battle to remind people that parking in an empty disabled bay is not something you should do if you are able bodied.  Just because it is empty now, doesn't mean that 2 minutes after you go into a store there won't be someone who drives up that does need to use it.

I understand that if you are fit and healthy, the difference between where regular parking spaces are and the disabled spaces are, seems negligible, but that is because you are healthy.  When you aren't able to walk very far, every centimetre counts.  Every metre you have to drag yourself across before reaching your destination feels like a mile.

I have often contemplated printing up flyers to put under the wipers on cars parked in disabled bays, without a permit, that say;
"It's hard enough being disabled, and because you parked here, you just made it harder"
I don't know what the answer is, to getting people to understand how vital disabled bays are to the sick and disabled.  Before I got ill I didn't understand how vital they were.  I never used them, but I still didn't understand how important it was that they were free for people who needed them.

Every time I challenge someone about parking in a disabled bay, when they don't have a permit, I have either been ignored or sworn at.  It seems that because people, with invisible conditions, are witnessed getting out of cars and walking to the shop, it is assumed that the Blue Badge means nothing, except the user is a scrounger and a fake.  Helen at Humanity before Hatred wrote an excellent post about this recently, I recommend reading it.

I just don't know how to reach those who don't understand.  Do they even want to understand, or do they like having someone to blame for the state our country is in.  Is parking in a disabled bay one way of showing the sick and disabled how little they mean, or is it just blind and unthinking ignorance?

Sunday, 19 June 2011

Working for Less than Minimum Wage

This week a Tory MP, Philip Davies, suggested that people with disabilities should be able to accept a wage that is beneath the national minimum.  He believes that,
"The people who are most disadvantaged by the national minimum wage are the most vulnerable in society.

"My concern about it is it prevents those people from being given the opportunity to get the first rung on the employment ladder."
What he doesn't seem to have grasped is that the minimum wage was set up to protect the most vulnerable in society.  It is arguments like his that play straight into the hands of the prejudiced.  By this statement he is implying that people with sickness or disability are worth less than the healthy.  Instead of addressing ways in which employers could be supported in helping the sick and disabled get into work, he is suggesting that we should accept less money in order to get a job.  Now, to me, that seems a bit backwards.  If someone is vulnerable, particularly mentally, why should employers be given an opportunity to manipulate their potential employees into accepting less than a fair wage to do the same job as a healthy individual.  Does that seem fair to you?

In The House of Commons he stated;
"When I went to visit Mind and I spoke to people there that were using the service offered by that charity they were absolutely upfront with me and they said that when they went for a job and they came across a situation where there were other people who had applied for that job, they've got mental health problems, other people haven't, they said to me 'Who would you take on?'.
I wouldn't be surprised if Mind are now spitting with rage, about the way in which Mr Davies has twisted what they told him.  While it is a fact that given a choice between two equally qualified candidates, one of whom was healthy, the other who was not, most employers would choose the healthy, but it shouldn't be up to the unhealthy to offer to take less money.

If this was made legislation, can you imagine the how unethical employers could take advantage of the sick and vulnerable?  If you consider that shortly, if the current government aren't to be stopped, there will be many hundreds of thousands of these type of people living in poverty with no other way out, other than trying to earn money by working a few hours a week, to the detriment of their health and sanity.

Mr Davies, I don't think you have really considered the consequences of your proposals.  Did you actually discuss them with Mind before you announced them?


Friday, 17 June 2011

A New Blog

I have been blogging about my artistic endeavours for around 2 years.  I kept my illness and my blog fairly separate, only referring to my pain levels in passing.  Recently in the UK the government has changed and the new ruling parties (it is a coalition) are dismantling our welfare system.  Our welfare system was not perfect, but it was certainly better than what is currently being discussed as the new alternative.

These proposed changes will affect me directly.  They will affect 10s of thousands of other people in this country and these changes are filling me rage and despair.

Rather than continue to post on my old blog, which is mainly for crafters, I decided to set up this new blog so I have somewhere to rant and cry away from my mainly international audience on my old blog.

I have no idea where this blog will go, or how long or how often I will post here.  I just know that I needed a place where I could really discuss openly how difficult it is to be in constant pain and have to battle the system.

I imagine for a while I will be wailing into the abyss, but hopefully someone will hear me, and if one healthy person understands a little of what it is to be sick or disabled in Britain in 2011, then I have achieved something.