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

Sacha and Sonia at the Water Rats

I hadn’t been out for days, in fact I had crashed since the last gig.  We knew this one was coming up and the day before Andrew asked how I was doing and was I well enough to go.  I was still struggling with pain levels but I had been stuck at home for five days and enough was enough.  I asked him to get tickets and we would go.

The Water Rats is a great venue right near Kings Cross, so for anyone looking for easy connections this is ideal.  We got there nice and early, parked up, grabbed a bite to eat and then made our way into the venue.  Everyone was lovely as usual, the disabled access was through the fire exit but it was nice and simple no lifting or getting out of my chair.

Soon familiar faces were arriving and it was so good to see people we hadn’t seen for a few weeks or even months.  Some do keep up to speed on my ongoing situation, which is lovely and just a shoulder squeeze means so much and often brings tears to my eyes.

Eventually it was time for the first act, our very good friend Jeanine Barry, she only had a short set of two songs, but this was a brief goodbye before she heads off to Nashville in just over a week to record her next EP.  She is super excited as are we for her.  

Our second act I hadn’t heard live before was a young lady called Katie Nicholas, she has a creative nature and is a designer which you could tell just by looking at her beautiful guitar.  As she started playing she soon realized her guitar wasn’t actually in tune, she apologized and started to tune it, like a true professional picked up where she had left off and just launched into her first song entitled “Empty” after a few songs you could tell she was getting hot she asked the audience why she had bothered dressing like a busker in winter?  The audience laughed with her as she took us into her next song “Childhood Street” it relates to when she grew up in Liverpool, all her songs were full of beautiful melodies.  Next she wanted some audience participation and covered Kacey Musgraves “Follow Your Arrow” this definitely warmed us all up.  With the tempo lifted she played us her brand new single “Sweet Talk” which I really enjoyed click on the link to watch the video I hope you like it too, it’s good fun.  Her final song was called “Heart of Gold” she had never played it live, Katie was about to explain about the song but decided against it, it was a beautiful song we all listened intently.  After a rapturous round of applause she left the stage.

A short break later and Sacha McVeigh was ready to join us, with her first album out now and this being the first night of her headline tour, tonight was in fact a big deal for Sacha.  You could tell by the big smile that you couldn’t take from her all night, she was in her element.  She started her set with “Time of My Life” quite apt as I’m sure that’s what she’s having at the moment!  Her whole set was full of energy and loaded with songs from the newly released album, however she did throw a fab Zac Brown Band Mash Up especially for Sonia, if you aren’t aware Sonia is signed to Zac’s label and has co-written a couple of their tracks.  So it was a good fun thing to do a homage to your friend, again it gave us all a chance to sing along to the ZBB songs.  Sasha then went back to her repertoire with “Someone To Break My Heart”, next the band were given a little break and left the stage.  “I Should’ve Realised” often country songs are about life events and this one is no different, it was from the heart, about an ex who had promised to marry her one day.  Then came a song called “You Only Live Once” now the saddest part of this song is that the co-writer passed away in January this year, before the track was finished, however to ensure his work features on the single Sasha is using the work tape recording.  You could feel how emotional that was for her, he had obviously become a really good friend and support for her, not just a writer of songs.  You did the song justice Sasha you did AJ proud!  The title track of the album “I Stand Alone” was written when she was only 14 her producer insisted it was put into the album, it has a fiesty, punchy feel to it, it’s all about standing your ground, doing things your way.  After introducing us to the band Harry, Bryn (who keeps everyone in time) and Andy (her left hand man).  We finished on “Mr Brown Eyes” which I really enjoyed an uptempo track that really did leave me wanting more.  At least the gig wasn’t over yet and meant I would be buying her CD to listen to her music at home. 😊

We had the chance of a small break before Sonia came out, a few more hello’s and then it was time for her to take the stage.  After an introduction she burst onto the stage and burst out into song.  Now the biggest problem for US artistes is when they travel over here often they can’t bring much, unless of course they are big names.  So Sonia had kidnapped Sasha’s band and considering their first rehearsal had been at the sound check for the gig at the Water Rats, she was really impressed with them.  She started with “My Name is Money” which was a strong powerful start to her set, she did comment that she was probably too rocky for our tastes, I think she read us all wrong.  Next up was “Put it in Your Pocket” followed by Fairytale Dream.  Soon she was pulling an old friend called Jimmy Sharp on the stage, Sonia had performed at the Water Rats with him, the first time she ever came to London, so she asked him to do a song, he performed “No Money No Love” which was a real treat for us all.  Once Jimmy left the stage she flew through her set, the time just disappeared too quickly.  The song “When We Are Alone” which is currently featuring on BBC radio Scotland’s playlist featured and this is to be her next single.  As is customary in Nashville we did a holler and a swaller!!  Raise your glass shout and knock back your drink 😜🍻   As her set came to an end and the room demanded more, the band left but Sonia was not going home.  She started with Gypsy by Fleetwood Mac, one of my favorites, a track called Virginia which was recorded for  lad called Paddy as he was too young to attend.  She sang Alabama as that’s where her own Momma was from and she said her Mom would be really proud of her now.

Finally Sasha and the band came back, they all sang Summer of 69, we all sang along and it was a fab end to a brilliant night.  Five acts in one night you really can’t ask for better than that.  We stayed to buy our merchandise and get some photos and chat to the girls Sonia again commented on being too rocky but I explained that everyone was singing along, everyone had bought tickets, even Kip Moore was amazed when we were singing along to his stuff so just get used to it, we wouldn’t buy tickets if we didn’t love your music, goodbyes said it was time to head home.  What a great night, but I knew I was going to pay for what I was doing to my body I was in agony already.  

End of an Era

Despite all the mentions in posts of wanting to change my doctor I never managed to pluck up the courage to actually leave them.  There were rumblings in the surgery late last year that it might have to close down, something to do with the lease, then the date was announced 8th April our surgery would be merging with Burnham Health Centre.  

In between finding out and it happening I became really poorly, had my two week admission to the hospital and then spent as much time as possible avoiding the doctor as possible, in fact since Christmas the only time I went to the GP was about the lump.  I made the decision that I had enough pain relief that my GP could no longer do anything for me anymore that I couldn’t do for myself.

So imagine my shock when I received a letter from the doctor requesting they see me to discuss my ongoing care at the new surgery.  Oops had I avoided them for too long?  They have probably received lots of letters from all these hospitals following visits and I’ve not been going to see them.  I just submit my repeat prescription requests and they get filled out, simple.  So this morning I’m going along to the new surgery to see my old doctor, it’s going to be very strange.

Even when I called the new surgery for the appointment the lovely receptionist walked me through the process and we had a nice chat about how it all works.  I explained it was daunting as for twenty years I had been with Minton Rise and this really was the end of an era.  She said not to worry they were lovely and would look after us too and hopefully I wouldn’t need to see them too often.  I laughed at that point and explained I had a chronic illness and would probably end up her new best friend on the phone, even she ended up laughing.  She made my appointment and said she would see me soon, that calmed my nerves a little.

So wish me luck I hope it’s all going to work out ok, there will be a lot of doctors to choose from and nurses, which means I shouldn’t be stuck when needing advise it support, as long as I can get an appointment!!


Some Good News

Two letters dropped through the door in fairly quick succession over the last few days.  Despite their assurance I would hear quickly it has taken three weeks for me to hear back from the Breast Clinic, the good news is the results have come back benign.  Which yes is a relief, but for three weeks I have been stressing myself out about it, as not only is the lump still there it has been growing at a steady rate, so that of course made me worry more.

I know I should now put this to bed for now, but with this thing growing, I will need to bring the subject up with my GP as I’m not sure why I have this large lump growing all of a sudden.

For now I can heave a sigh of relief but I’ve got enough of my plate with chronic illness thank you!  

Funnily enough my friend who was diagnosed in 2013 with breast cancer said something which still lingers with me to this day, she said one day when she visited me “I would much rather have what I have than what you have Sarah”.  She explained that in twelve months time she would be through her treatment back at work and well on the road to recovery, whereas (and she didn’t want to upset me) with my illness there was no “getting better”  no going back to work or road to recovery and she was right.  We bumped into her a couple of weeks ago and she looked really well, her hair is back and she looks fab, she’s working again and living life to its fullest, me I’m wheelchair bound now due to the pain and PoTs and when I do go out I get so tired I crash for days.  She was so right when she said that to me, it didn’t upset me, it just rings so true, every day.  I would love something that can be cured or fixed, that you can go to the hospital and they all understand, but for now I’m stuck in this rut!

So thank you for the good news but please can you fix me ….. Please?