I am a bit late in blogging about this subject, I was a bit poorly when all this kicked up, so I just tweeted a link to my Changing Body Shape blog post.  It is a very relevant post relating to the subject and let me explain why.

  Jamelia appeared on Loose Women last week and and decided to make a statement which couldn’t be described as fat shaming because she even shamed slim people, her exact words were.  “I think everyone should have access to lovely clothes, BUT I do not think it’s right to facilitate people to living an unhealthy lifestyle”  she didn’t stop there, oh no she went on saying “I don’t believe stores should stock clothes below or above a certain weight.  They should be made to feel uncomfortable when they go in and can’t find a size”

Now I can speak from both ends of the scale having been a size 20 and now being approximately a size 4 or possibly less at the moment, this comment is the most tactless thing I have ever heard.  Jamelia  some of us have no choice about our size, what I didn’t know about my weight when I kept ballooning between these two varying sizes was that I had a hereditary/genetic condition called Ehlers-Danlos Syndrome.  What that gives me is some chronic gastrointestinal issues,  previously I seem to have been able to have managed them, however now in later life my body seems to be failing and my GI system is shutting down hence the horrific weight loss, two stone in two years.  From a size 20 to a size 4 in two years, I’m not anorexic, I would love to eat, however it hurts and whilst all my doctors are trying to remedy it, it looks like I am heading towards tube feeding.

So why can’t I go shopping, in my wheelchair, to normal shops like everyone else?  Just because you say so?  It’s hard enough to get size 6 and they don’t fit me properly, I’ve been to the States and bought size zero, as you can see from the picture they are now too big.   

 So what do you want me to do?  Go to the kids section and wear Disney tops with glitter, leggings with butterflies all over them?  I’m an adult please treat me like one.  Just because I am sick and in a wheelchair doesn’t mean I need to be treated like a moron.

So how about starting a campaign to get more clothes for women like me, who can’t find suitable clothes for our body type and specific needs, don’t shame us, help us learn to love our bodies.  I’m struggling to love myself enough without people like you spouting on TV that the world shouldn’t cater for me.

Rant Over !!

Date Night

Having spent nearly all week, apart from my ESA assessment appointment at home, I was going stir crazy.  I wanted a little bit of normal, to try and be husband and wife just for a short while.  I knew this wasn’t going to be easy but I was willing to give it a go, so when Andrew came home at lunchtime and mentioned going out later I had agreed, he genuinely looked shocked but I explained I would need help with bathing and a hair wash.  So he came home and helped me get organised so we could go and enjoy a few hours together.

Now what do you do on a Friday night?  I can’t drink alcohol and Andrew has to drive so a pub is out of the question, a packed cinema is far from ideal when we want to speak to one another, so I thought I would be doubly brave and go for a meal.  Yes I can’t manage food but I would try my best and placate Andrew in the process by getting food down in front of him.  We headed into Maidenhead and even though we had no reservation were soon seated.  My only issue was that to have an accessible seat you have to be near the door, which had been left open, with my inability to regulate my temperature I was feeling the cold most of the evening.

We ordered our drinks and then food, it was not a rushed meal, slow and steady.  I ate as much as I could but knew I was in trouble as soon as I started my main meal, the pain just started and kept building.  Andrew told me to stop eating but I didn’t let on how severe the pain was, I wasn’t going to spoil this one night out we had experienced alone together in months, and I am talking about a proper night out.  No gigs, cameras, distractions or anyone texting us, it was just us for a change, I refused to let my pain get in the way.  It was trying its hardest but for now it could just wait until we got home.

He ordered a desert and coffee, we shared the desert and it was just the perfect end to our evening, albeit I was in my chair and in pain but for a moment it felt like old times.  We have been together for 23 years and as I looked across I realised that this man who cares for me, does so in every sense of the word, he truly is a special person, a real one of a kind.

We paid the bill and left for home, I was relieved to be honest I was exhausted and ready for bed, despite having only been out of bed a couple of hours.  Once home I double my pain relief dose and took some medication for my stomach but it didn’t seem to help.  Over the next 48 hours the pain deteriorated and I have been so sleepy, my abdomen is super tender but there is nothing I can do.  I have my first set of tests this week and once those are done we might get an insight into what is going on.

In the meantime I am thankful that for once I got a chance to spend a special night with my husband because all too often he is so busy and I am so ill.  So when we get that opportunity we needed to grab it with both hands and remember we have “One Life so Let’s Live It”

My Family

 This post is real from the heart stuff, it is to do with my EDS because since my diagnosis its bought all my children back to me.  Why?  Because life is too damn short and because I am their mother and if I hold a grudge or bear malice then what sort of example is that in this world!

As you will know if you are a regular on the blog in September we reconciled with Christopher my eldest son, who we hadn’t seen for a number of years.  He has emigrated to Australia and for one reason or another we just weren’t talking.  It took Katie putting two and two together and a lot of courage on my part to ask him to meet us one Monday night in Singapore but I am thrilled we did.  To know him and Kim (his girlfriend) are part of my life again is so very important to me.  He’s coming to the UK in August and the plans are for us to travel to Australia in March 2016, health permitting.

Katie, my DD, is just super special.  She’s been really poorly lately and I’ve been worrying about her on top of myself but she seems to have turned a corner and this week she started a new job which comes with accommodation.  So this means she will no longer be living at home.  Its a fantastic opportunity for her.  The kids she is nannying for are absolutely as cute as buttons, she is so happy about this, its nice to see her smiling again.

Finally my youngest son Jamie in 2010 and 2012 we had serious incidents with him, both involved him leaving the family home and the police being involved, I won’t go into more detail than that.  We hadn’t seen him for nearly three years until a few weeks ago we bumped into him in a petrol station, he came over and hugged us both and said he would like to see us to talk.  We agreed that maybe it was time to sort things out.  Jamie is 21 now, he has settled down, got engaged to a lovely lady Lesley and just changed completely.  Gone is the stupid young boy who spent is life drunk and in constant strife, now there is a fairly sensible hard working young man.  Life is about forgiveness, it will take time for us to work through everything but last night we spent an evening with them both and it was nice to just sit and chat and be together.

So that’s it all three of my children have their mother back, because thats what I am their mother, if they need me they can call me, for a chat, for a hug, send an email, for advice.  I can’t bear a grudge, hold something against them as life is just too damn short.  I am too ill to sit here and feel sorry for myself and not have a life which has the most important people in the world filling it for me.

If only all mother’s could be that forgiving, family are important you only get one and when they are gone they are gone, don’t waste one moment without those important people in your lives x

ESA Assessment

  In February 2014 I applied for Employment Support Allowance when my sick pay ran out, initially you are placed on a assessment rate for the first thirteen weeks whilst you are waiting to be seen.  Then once you have been assessed you are placed into one of two groups either the support group, for people who are too ill to work, or the work related activity group, for people who should be actively looking for work but need help.  The weeks turned into months, I kept calling the Department of Work and Pensions and they said the same thing time and time again my file was with ATOS and doctors were assessing the information.  In February this year my ESA ran out, I was only entitled to 365 days worth, I received a letter telling me it was stopping and resigned myself to the fact that despite not having had an assessment that was the end of the matter.  However a few days later another letter arrived telling me I had a medical to attend, now that is irony for you.  My benefit ends and now they want to medically assess me.

The day of the assessment arrived, we were heading off to the meeting in Reading and just before we got on the motorway I got the call to tell me it was cancelled.  I wasn’t surprised I had heard via online forums that this sort of thing happened all the time.  So another appointment arrived in the post, yep you guessed it that was cancelled too, third appointment arrived, the only difference was this was a morning appointment.  I spent two days thinking this isn’t going to happen and then the morning of the meeting was awake at 5am thinking should I ring the centre to check before we sit in a lot of traffic?  I didn’t bother in the end, we just made our way over and checked in for the 10am appointment.

After an hour and a half wait the lady on reception came and had a chat, she thought a nurse would be assessing me but something had flagged in my file, so a doctor needed to see me, unfortunately they only had one available that day so it would be about another half an hour wait.  Well we had been waiting since 10am so there was nothing more we could do and the DWP have you over a barrel really.  I just wanted this over and done with!

Finally the doctor came out and called me through, he was really pleasant, we went through to his consulting room and he explained the process of what would be happening.  His role was to decide if I was fit to work in my current condition that day, he fully understood my form had been completed some 14 months previously so information may have changed so this was my chance to update the DWP with anything I needed them to know.  He would then make a recommendation to the powers that be about my health, my condition and suggest which group I fall into.  In fact he would go and make that call whilst I was still in the building.

We chatted about the PoTs as that was all I had explained on the form, so I immediately updated him about my Ehlers-Danlos diagnosis, straight away he was talking about secondary symptoms and issues.  He knew all about the condition, it was amazing, he explained he used to work in orthopaedics so had seen various cases.  He was then asking if I struggled with brain fog, bladder problems and other issues, I confirmed all of them.  He was typing up a report at the same time as talking to us and when we finished he read it back to us.  He asked if we were happy with that and agreed with everything he had written, it was fine, just as we had discussed.

He asked me to do some very careful movements with my arms but my left arm was not co-operating, he could see how much pain it was causing me.  He took my blood pressure and pulse and stated they were ok for sitting down, how quickly would they change, I said if I stood it would be immediate but my vision would blacken and syncope would start, he didn’t want that, so made notes to that effect

He left to make a call, took a pile of my consultants letter for copying to support my ESA application and came back a few moments later.  That was it, he once again apologised for our long wait and hoped the assessment hadn’t exhausted me too much.

So now we wait for the decision, obviously there is some back pay to come for the variance between the assessment rate and the correct rate you are meant to receive, so that will help pay some bills, also there is a disability premium which should be relevant.

For a year I have been on a forum and I have watched with fear as people tell scare stories about their assessments, about wrong decisions, about how rubbish ATOS are, about tribunals and appeals.  When I had my PIP it was nothing like I expected, a lovely lady came to my home (I didn’t even ask for a home visit), she didn’t trick me, try and trip me up, she was just nice and she told the truth, I got enhanced rate on both!  Now I’ve had an ESA assessment, ok so its been slow, but they are overworked, they are trying to catch out benefit cheats, so if it takes a little bit longer to get to me, I totally understand, the ATOS people have been nice and kind and I can’t personally fault them yet, then again will I be saying that when the decision comes through?

Getting Help

After visiting the Royal London they had asked me to increase my food intake, little and often, high calories, ie lots of cake and chocolate and that really was the doctors orders, and for me to monitor my weight.  A month after my visit to the hospital the pain I was suffering from trying to eat more was increasing, I was now experiencing vomiting on top of all my other symptoms which was new to me.  I needed advice.  Thankfully they had given me the clinic telephone number to keep in touch so I thought I would get some help, exactly what should I do now?

I called and left a message for the nurse to contact me so we could discuss what next?  A couple of days later she rang and we had a lengthy chat and I explained what had been going on, she understood fully that I had been trying my best but with zero weight gain it seemed pointless for me to continue putting my body through the continuous pain.  She suggested I go back to how I was previously eating, using my Ensure drinks and small meals.  She would speak to my doctors and see what they want to do in the meantime, whether they wanted to get me kickstarted onto tube feeding to stop the malnourishment.  The good news was I had already received my test dates so that was all in the pipeline but it was just a case of how long could my body cope with the lack of proper nourishment.

It took her a few days to speak to my doctor and the Professor and finally I got another call, she asked how I was, I said ok and she then said no really how are you?  At that point I said rubbish and burst into tears, I don’t think I’ve mentioned, this lovely nurse has Hypermobility too, so she “gets it” she knows how we feel, so to be asked the second time “how are you really” is the I know you are lying, now tell me the truth.  So I poured out my heart, told her everything that had been going on since we had last spoken and most of it had been awful, even that day I was having a day off food just because I couldn’t cope with the pain or nausea anymore.  She agreed that was fine, at least I was listening to my own body, so I knew when enough was enough.  She told me her call wasn’t great news really the Prof didn’t want to start tube feeding at this stage, I didn’t feel this news was all that bad.  After all I wasn’t desperate to be tube fed, it was something I knew I might need eventually.  She explained that the test would need to be completed before any kind of intervention so the results would be correct and I completely agreed.  I then said I have been waiting since December I can wait another couple of weeks after all.

We then discussed how I cope, manage on a day to day basis, how I get out and about.  Albeit I never go out alone, that wasn’t really an issue so our trips all about planning. For my PoTs symptoms and my EDS hip pain I have my wheelchair, for my gastric issues and urgent toileting needs I have a radar key, when I have plans I reduce all food intake to minimize the risk of any problems as well, basically I try and plan ahead so I can try and enjoy my occasional trips out.  When I am out, I now take additional pain meds and I always carry a Ensure, so when we go for food, Andrew can eat, but I don’t  have to have anything solid.  She was so impressed by my attitude to my illness, she felt that I had the right attitude, too many sufferers just stay at home all the time and that’s it life over.  I told her that I did feel that on occasion I wondered if my life was over and she said there was no way, I was too proactive in getting out, blogging and raising awareness.  All positive stuff, it felt like a real pat on the back from a medical professional.

She agreed to check all my tests were booked correctly and my follow up appointment was actually with the Professor.  However she said in the meantime if I needed a rant, or a shoulder to cry on I was to give her a call, she would be more than happy to help me through this tough patch.  I was so touched by her kindness.  I knew the referral to the Royal London was going to be the best move for my gastrointestinal issues but to find a supportive and caring nurse along the way has been amazing.  There are some real nursing gems out there, thankfully I have found one of them.

Blue Badges and the Congestion Charge

With so many of my hospital appointments now being in London, it was going to get costly having to regularly pay the congestion charge.  Once again after a bit of research, and often that’s all it takes no-one is ever forthcoming with this information, I found out that if you hold a blue badge you can register up to two vehicles that you use as exempt for the congestion charge.   

 The good thing is you can also add temporary vehicles if you have a hire care, or a friend uses theirs you just need to call them on the morning before you travel.  The cost of this £10 for the lifetime of your blue badge, so for me this is until February 2017!

I logged onto their website and printed off a form, sadly you can’t do any of this electronically online.

I completed the form by hand and sent proof of my receipt of Personal Independence Payment and the image of my Blue Badge.  I popped it in the post and the website explained to allow ten working days for he application to be completed.  I was really impressed when less than a week later everything arrived to say it had all been approved and we no longer need to pay for the charge.

As you know not only are we travelling for Hospitals but for concerts so this gives us the freedom to travel at any time of the day.  It no longer means we have to rush about after 6pm, everything can be taken nice and steadily which is a good thing for me, its a nightmare when we have to leave everything last minute and we are flapping around it makes me very symptomatic so this also combats that issue.

So I can highly recommend this service for anyone who has a blue badge and doesn’t know about it, if you need to apply for the Congestion Charge exemption, click here