Battling the DWP

In 2014 I started my first ever claim for PIP that’s Personal Independence Payment for those that don’t know the benefit lingo, it’s a disability payment that has two levels to it, standard and enhanced.  In 2014 I attended the Reading assessment centre and met with an amazing rheumatologist who knew all about Ehlers Danlos Syndrome.   He was empathetic and as I left the centre although it had been an awfully stressful experience, it hadn’t been as bad as others had made out.  My award arrived and I was given an enhanced decision on both mobility and care, which when you look at the questions was fair, the aids, the care Andrew had to provide behind closed doors and the constant escorts as I am no longer able to travel on new journeys alone, meant the gentleman had listened with care and written a detailed report for the DWP to base their decision.

Move forwarded to the end of 2016, my reassessment paperwork arrived and most of it was tick boxes, how had my condition improved, better, worse, the same.  I answered the questions accordingly and sent the form back, we hoped the process would be a fast one, we were desperate for a new car and wanted to get a Motability car but with less than 12 months left on my award they couldn’t help.  As Christmas got close, no sign of an assessment, we got through and into the new year, the old car just played up to the point of falling to pieces, it had reached its death bed.  So that had to be replaced.  We had to get finance for a newer car, but on the plus side the newer car was similar to a Motability car, it was new, light weight, easy to drive and might mean on good days when I was well enough to leave the house I would be able to use it.

It was another two months until I got the letter to explain I would be having a home assessment on the 3rd April.  I was shocked that I had been offered an assessment at home with no fuss but maybe being on enhanced rate, this was standard procedure.  My appointment was at 10:30am so the night before we headed to bed fairly early hoping for a decent nights sleep.

As you can imagine Mrs Stressy Pants, yes me, got next to no rest, I was worried sick how this would pan out, the press had been rife with stories of benefits being cut and poor assessment decisions, so I just felt on the back foot and the assessor hadn’t even arrived.

There was a knock at the door at 9:30am and I panicked, it couldn’t be now, this was too early!! The appointment was for 10:30am, I was at this stage still resting in bed due to pain and fatigue, so hubby ran down and yes of course it was an hour early assessor.  He set her into our front room and then came to get me out of bed, she would sadly just have to wait.  So after helping get me up, dressed in PJs and dressing gown, trying to tie my messy hair up and cleaning my teeth, hubby then got me downstairs, the assessor missed that bit, me bum shuffling down our stairs, I’ve been doing it for years now, I can’t deal with having a stair lift fitted!  We got my crutches and I met her, she was very young, she mentioned her name and job, but I couldn’t tell you who she was.  We sat and started our meeting.  I can’t tell you much of what happened, it’s a blur now, but we went through my form.  All I do know is at the beginning she admitted that she had googled EDS that night to check up on the symptoms etc before coming out to me.  She didn’t ask me about my memory, the last assessor did number games and alphabet checks, nothing like that this time.  She didn’t ask me about any depression and to be fair I forgot, I have terrible “brain fog” I can’t remember anything, so if you don’t ask me a direct question I won’t remember to tell you something.

In fairness I should have just written, pages and pages of lists, but this would have kept her at the house for weeks, however it would have meant I got everything done and thoroughly.  She asked to physically check me which I could do, of sorts but it hurt, but I hide my winces, the pain,  from everyone it’s habit.

After an hour she felt she had done everything she needs and thanked us both, Andrew had sat through it as my witness but I’m not sure he will remember much, he can’t remember what he had for lunch yesterday ūüė≥

A few weeks later the dreaded brown envelope dropped through the letterbox, I sort of knew before I opened it, I had been downgraded from Enhanced to Standard, in their opinion I “have got better”. My chronic debilitating illness has miraculously improved??

Two things that stand out from the reports are, my medications, I state that I require aids not only to remember to take them but also I have them all dispensed via the Chemist as I was getting confused with my tablets, so they are sent to me in Nomad packs, the DWP awarded me zero point saying no aids used or required.  Secondly the DWP claim I am able to plan a new journey to a route I’ve not travelled before.  That is impossible, I can’t even travel 30 miles alone.  My furthest is about two miles up and down our hill and I explained that, I can get to Sainsbury’s/Tesco but no further, again zero points awarded as I can plan a new journey according to them.  The whole report is full of inaccuracies and non truths, it’s hard to read something so wrong.  

So the first step was Mandatory Reconsideration, which we started back in April and the DWP stood by their decision.  The next step is appeal, this means I have to take them to court and fight for my rights, which I am terrified to do, but I have to, they are wrong, if I could travel alone I would do so much more with my life, if I could remember things, like my meds, I would be employable, this is more than just a benefit, this is about the bigger picture.  So we are still waiting for our day in court, despite the DWP’s wish that it was overturned, I just have to go in and try and have a clear less foggy day.  Maybe write lots and lots of notes to help me get through those stressful few hours 

Wish me luck x

S xx

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M H Struggles

Anyone who used to visit my blog previously knows I’ve had my dark days, I suffer really badly with cyclical depression.  It’s always around tough “anniversary dates” for me and I know when I can feel these awful clouds gathering.  One particular time is  July which is my fathers birthday, my Dad passed away several years ago and even now at nearly fifty I struggle with his loss.  He died just one week before Christmas, so as you can imagine, I don’t particularly enjoy that time of year either.  A couple of years ago Andrew, my hubby, took the extreme measures of flying us away for the whole of the festive season and to be honest that was the only year depression didn’t hit me hard.

Last month I could feel the spiral, I had experienced one too many awful hospital appointment.  Listening to the same “nagging” doctors, traveling miles and miles, it’s just too exhausting and with a condition like EDS so unrewarding, you come away with no answers, no solutions, ever!!  On this occasion, we both sat in the car out of London because I am always escorted to all my appointments and I could feel the tension in the air.  Before we got home, we started speaking about the appointment and there was a conflict of opinion of what had been said.  I believed the doctor wanted me off my opioid medication and Andrew believed he wanted me off ALL my medications.  The discussion became so heated we just had to stop talking to one another, neither of us would back down.  Over the next few days I just withdrew into myself and felt I couldn’t talk to anyone for fear of repercussions, I slowly began to get weepy and on edge at the slightest thing.  I knew the signs, I needed help, so called my surgery for help.  They gave me the number for “Healthy Minds” and I rang them straight away, this was a huge step for me, I had never felt strong enough to get help before, previously resorting to self harm.

It felt like a weight of my shoulders making that call, to say I needed help because I knew I had MH issues and couldn’t cope alone.  They took my details and called me back a few hours later, for my assessment.  That initial assessment took an hour and she went into a lot of detail, not just about my background but about my current health condition, as well as my general health status.  A few days later she called back with a decision on what services they could offer someone like me.  There were three options, one on one face to face counseling but that could take months maybe a year to happen, one on one telephone counseling again another long waiting list, or the option I chose with the shortest wait time of three months a Long Term Health Condition support group.  This would involve getting to my nearest large town, in my case High Wycombe and sitting down as a group for eight weeks with others suffering with other types of illnesses, not EDS and discussing how it has affected their lives, my assessor explained I wouldn’t necessarily have to speak at every group session, you only get out what you put in.  Yes it’s a long wait but sadly MH services in my local area seem to be lacking for people like me, unless I take an overdose and end up in crisis, I’m not one of the “bad ones” 

So for now I’m managing my MH struggles ok, I’m fighting the demons on a daily basis but honestly nobody knows what goes on behind closed doors and before you post something inane on Facebook or Twitter about “always being their for you and please share with five friends” really think, do people with MH issues pick up the phone and call when they are at their lowest?  I would never call anyone on my friends list just because I had seen that post, in fact I would go out of my way not to, it takes a few seconds to message me privately, that is what people like me need, a little hand to hold in our darkest moments, someone to pass a tissue when we are weeping or to make some tea.  Not to post some stupid Facebook status, that won’t help me, not reach for the pills and booze next time I’m feeling at my lowest ebb.

I will let you know how the group sessions go once they start but that’s another month away.

S xx

EDS follow up

As with my Gastro follow up, I’ve been traveling up and down to the hospital diligently.  It wasn’t until my hospital appointment last week that I got really frustrated, well it started with the copy letter arriving only the week before, that had taken three months since the last appointment in May to turn up and the contents less than impressed me.

I am the type of EDS patient that is aware that life isn’t going to improve really, you only get out what you put in and there is very little point moaning about the condition.  My friends don’t want to hear me griping about it, the nurses at the clinic, the people who I come into Day to day contact, so I generally never tell anyone the truth. “How are you Sarah” ….. “Fine” will be my response or “I’m ok today thank you” …. they don’t need to know that I’m in agony, they don’t need to see me crying, or puffing and blowing because I’m feeling a bit potsie but dear god these are all things I’ve started noticing around me.  So maybe I should tell the truth because by hiding the fact I am not ok, the medical profession have decided they can “discharge” me from their care.

So in the middle of the week, the day before my birthday I headed up to my follow up appointment to discuss, what next and I was already boiling under from the contents of this letter.  The doctor who I was seeing was the doctor who diagnosed me, she is generally lovely and I felt awful that I was about to offload with her all guns blazing but I had really had enough, she had dictated this letter so it was her choice.

She asked how my shoulder was and I explained that apart from the increase of pain, which I could only describe like sciatica down the arm, I at least had a little more movement, I just needed to get back into the pool as I felt weightless excercise may help.  She agreed with me and felt I was taking positive steps in the right direction.  She then asked me about the three week inpatient program as this was something they had been pushing on me for years, I have been reticent to do it, I struggle with separation anxiety and don’t cope away from home and have explained this time and time again, so once again said this but addressed the letter this time.  I told her straight I was upset that she had sent me a letter basically telling me that this would be our last appointment.  So what was I to do next, her answer go to my local hospital!  I explained they couldn’t even spell ehlers danlos syndrome let alone treat it, so how would I be able to trust them, I didn’t have a local rheumatologist and I had been traveling to a Centre of Excellence because I had been led to believe that they would look after me and have my best interests at heart.  She advised me that EDS was only a manageable condition and they had reached the end of the line with me, so her management wanted me discharged.  I told her that was not acceptable, I was not just a number on a file I was a patient with a complex condition, I had six different consultants for all the other issues, Gastro, Neurology, Dental, Cardiology, Shoulder Surgery & ENT , yet the one umbrella consultant wanted to fly away?  How does that work.  She asked how she could help me, by this stage I was very upset and in tears, I carry my medical paperwork file everywhere, just in case.  I slammed it on her desk and told her straight.  Four years ago I was leading a normal life, working, enjoying my hobbies, socializing, generally pain free, now I carry this around to a minimum of six London Hospital appointments a month, thanks to EDS, I have had all sorts of lies written about me, drug addict, mentally ill and by that I mean psychotic, anorexic but I’m still fighting and you dare to just throw me on the scrap heap, your job is to help me, you are the doctor I am the patient ….. I put my trust in you to help me and here I am begging you to help me, at that point the room went silent

She very quietly said sorry, she wouldn’t have sent that letter had she known all this, but Drs don’t listen, they don’t know because they don’t have enough time for us, so at this stage her management can go shove it, she is keeping me on as a patient, we have agreed to try the three week program as a compromise, but if my anxiety gets too much I can just go home, they will let the psychology team be aware.

So it’s time for me to stand up for myself in all aspects of my care, I am truly fed up of being the EDS patient that just gets walked all over because I am meek and mild, because I refuse to put up a fight in case they think any less of me.  I don’t really care what they think of me, if I want to survive I’ve got to be able to fight for my own rights 

Gastro Update

The last ten months have seen my weight fluctuate up and down, anything from 48 – 53 kgs, it means I become very fixated on the weighing scales in the bathroom. ¬†At one recent hospital visit I challenged their “weigh in” as I had been checked only a week previously and was 50 kgs and suddenly I was 2.6 kgs heavier, over that week I had been sicker, eaten less and been feeling decidedly poorly, so how could I gain weight? ¬†Their answer, every doctors or hospital scales is calibrated differently so the only constant would really be my home weight. ¬†So I am now trying to check myself every week, to get out of the habit of every day checks, I remove all my clothes, it will be a Monday morning at the same time. ¬†If I keep a weight diary then I know what direction I am going in, this appears to be the only way to track MY weight accurately.

I still have two hospitals looking after my care, my local hospital King Edward VII, under Wexham Park Trust and the Royal London Hospital, this is where I am under Prof Aziz’s care. ¬†Local do my day to day care and the London are for my expert advice as locally they have no EDS or Gastroparesis knowledge.

I’ve been trying to avoid tube feeding for the last six months, just as I really don’t wish to go down that invasive route, until it really is the final option. ¬†Ten days ago I went to the London for my most recent follow up and it was decided by the SHO that I saw that in his opinion most of my issues “could possibly be caused” by opioid use, therefore he would like to see me reduce and eventually stop my pain medication to see if the motility of the gut returned. ¬†Now this is all well and good but then they give no magic solution on how an EDS patient is meant to live in pain, he kept saying how the pain receptors would adjust, my body had just adjusted to live with maximum amounts of pain relief, believe me I am probably one of those patients who takes a small amount of pain killers until I need it for breakthrough pain, then I “top up” my painkillers. ¬†So I listened to what he said, I did ask what else he suggested, as it can’t all just be pain killers causing this problem, but on reflection, I actually got ignored. ¬†So I came home that day really distressed and of the mindset that I would have to cut my pain relief to prove a point. ¬†Then on the 3rd August I saw my local consultant, they have been in discussion about fitting a gastrojejunostomy, this would help speed up the motility of my gut. ¬†I explained what the London had advised about pain relief and he made the notes, I also told him that the London advised against the GJ at this stage but I asked if there was an EDS or Gastroparesis specialist within my hospital trust. ¬†Since 2014 I had seen 6 various specialist none of which had a clue about my condition, he began to get a little flustered and my questioning him. ¬†I explained that I was the patient, putting my trust in them the doctors, asking for help, but they weren’t helping, they were just delaying my recovery. ¬†I needed help and urgently. ¬†So I asked to be sent to someone who know about EDS, be it at another hospital or a different doctor.

I got the usual “well you are a complex case” ¬†and I just said well I am sorry that is not good enough this time. ¬†I have had to learn about my condition over the last three years, I would have thought, each doctor who had come into contact with me would have had the time to read up about Ehlers-Danlos, he then decided he would return me to my original Consultant who could decide what to do with me next.

I have decided I am fed up of sitting back and being walked all over by the medical profession, well not just by them, by everyone, it is time for me to stand up and say NO I want full and fair treatment, I deserve it, I have a right to it, if you can provide it, find me someone who can.

So my little victory is standing up to my Gastro doctor and saying no more, ¬†I refuse to be pushed around from doctor to doctor because you can’t be bothered to understand EDS. ¬†They should remember their hippocratic oath

“I will not be ashamed to say “I know not” nor will I fail to call in my colleagues when the skills of another are needed for a patient’s recovery”

My Shoulder

So ten months ago I told you all about this shoulder and how I had been to the Stanmore for another Fluro guided injection at the advice of my surgeon, well that gave me no improvement and I went on to see the best EDS physio, with absolutely no success.  I have also told you about the “hospital short stay” in which they passed a load of nerve pulses into the shoulder to kill the nerves in an attempt to stop the pain receptors.  Guess what another failed attempt.  So by the end of the year it was decided that surgery really was the only option, my shoulder was stuck firm and I had such a limited range of movement it would need to be checked while I was unconscious.

In April this year my date came through and I was nervous as hell, the thought of invasive treatment scared me whitless but I really wanted to use my arm again, two years with only one full workable arm was enough now.  Then I got the call to say that my surgeon had been involved in an accident and the surgery would be postponed for eight weeks, so late June I was heading up to the Stanmore for my procedure.

I’ve always been anxious about procedures mainly because my local hospital is so bloody atrocious at how they deal with patients and their relatives, at booking in they normally expect the relative to dump the patient and just go away, this is where my panic sets off and I go into a tail spin.  So imagine my shock when this hospital does the exact opposite, at no stage did they usher Andrew away from me, even as they wheeled me to theatre they let Andrew walk with me, they let him come to the anaesthetic room and they could see I was calmer with his presence.  I have NEVER had this, I have always been stressed to the point where they have needed to knock me out due to heart rates bordering the 200 BPMs, just through fear.  Once they had given me the pre-med and I was woozy and calm, he left and I was in a “happy” i.e. pissed place.

Post surgery I came round to my arm in the largest blue foam sling, hanging upright, “oooouch” I was not comfortable, they finally got me back to the ward, by which time I found out I had been gone two and a half hours, for what was meant to be a twenty minute surgery.  We waited patiently for the surgeon and once he appeared he explained what had gone wrong (or right)  Basically they had knocked me out too soon, so had to bring me back round, they needed to manipulate my shoulder to find out range of movement and discovered it was stuck, at the point it was stuck if he had forced it any further he would have fractured my arm so he stopped.  They had then put me back into full anaesthesia and started the operation, with two keyholes, front and back they looked into the joint and found that there was a lot of war tissue and fibrous bands that had healed over the shoulder joint following the injury at Wheelchair Basketball two years previously.  He commented he had never seen this type of injury in an EDSer before, so he had cut away all the bands and fibrous tissue, and been able to give me a better range of movement.  By the time surgery was complete I was able to move my arm fully up and down and to about 70 degrees away from my body.  All in all a success, but he had worked very hard, Mr Majed had met me in the clinic at 7am that morning it was now 8pm, he commented that he would see me the next morning to see how I was doing.

After a terrible night of pain and no sleep, I was able to return home, I am now in the physio stages of my rehab.  The good/bad news is I am back to being hyper mobile in my shoulder I have sublaxed fully it twice since the surgery, and three times partially, partial is when you feel it going out and stop yourself continuing the movement, so slide the joint back in.  Yes it is as painful as it sounds.  I saw my phsyio last week and the plan is to get back in the swimming pool to build the muscle in that shoulder to try and stop the sublax.  The main issue is the shoulder head sits permanently out of joint and is quite happy like that, but i need to train it to sit in joint.

So my shoulder is currently a work in progress I need to work it hard, I will keep you up to speed on how it is doing

S x

Long Time No See

Apologies for my absence, a mixture of cognitive issues, pain and fatigue have meant that just being able to function have taken precedence over the blog.  However in a weird way I have missed the cathartic nature that is getting all the “crap” out of my head and onto the keyboard.  It wasn’t until last week when I was really struggling emotionally and went to see a friend and he commented about my blog and that it was really sad that I didn’t do it anymore.  So I felt it was time to try and make a comeback.  Now the blog posts may be sporadic, I can’t promise they will be a daily feature on your timeline, I will try and write as often as my brain and pain levels will allow me, however, I do have enough material to keep me going for about six months.   After all it is ten months since I last wrote you a blog post and so much has happened in that time.

For now I can tell you that I am managing my condition as well as I can, I am having approximately six hospital appointments a month with various specialties, along with multiple GP and nurse appointments at my doctors surgery, as always I try and keep smiling, as my motto is life is too short but it does get hard at times and my MH has taken a knock and I will address that in a future blog post (in more detail)  Next week is my 49th birthday and yes age is a number but I am slightly dreading it, only one more year until the big 5-0.

I’ve also had to be re-assessed for my PIP and the very nature of that has caused an abnormal amount of stress, needless to say it hasn’t gone to plan and again there will be more in the blog about that.

So I can only thank you for your patience, for sitting waiting for another blog post to appear one day,  EDS is one of those conditions that you have to take the rough with the smooth and at the moment, things have been pretty ropey but I need to use my strength of character to fight this illness because nobody else will do it for me.

So welcome back to Living With EDS UK, feel free to comment, have your say and let me know what you think


Sarah xx


Another Shoulder Procedure

Back in March I had the first procedure on my shoulder you can read about it here,
I wouldn’t say it was a huge success. It didn’t give me an additional movement but maybe knocked the pain down the scale a notch. With that in mind when I went back to see Mr Majeed he couldn’t work out why I had no mobility, he examined me again and really couldn’t get what was once a very hypermobile shoulder to shift. He moved my good arm and the range of movement is quite scary, I can get my arm so far up my back I don’t need anyone to zip up a dress, or put sun cream on. So what had gone wrong? He looked at the MRI, X-rays and drew a blank, maybe there was something inside the joint that just couldn’t be seen on imaging.
My options were to go and see the best physio at the Stanmore to see if he could release the joint, then if that didn’t do the trick he would preauthorise a further steroidal injection into the shoulder and see if that did anything. I was then to return to him a month later to discuss the invasive options.
On Tuesday this week we headed back to the Stanmore for another fluro guided injection under X-ray. It was a different Doctor this time and they had a new machine (see the picture below) in the department, so walking into the room was a bit daunting. Once again they were very kind and supportive, they let Andrew stay in the room. I could hear his voice throughout, this settled me, I didn’t overly panic but I was terrified, I don’t like needles. After the procedure was over I had a bit of a reaction, they think it was an adrenaline dump as I couldn’t stop shaking but I just wanted to head home. I assured them that if I felt too poorly I would call my GP and they didn’t need to worry. I would give the RNOH 10/10 for their compassion and support.  So thank you for being so kind and understanding, my local hospital are just by the book rude and unhelpful, you went out of your way to make sure I wasn’t scared any further.
In the meantime as you know I had seen my pain specialist who had also given me some treatment, which really had done nothing to help, you can read about that here
So after lots of needles into my shoulder, it’s safe to say I’m done with having it fiddled about with, I am fully aware that surgery is now the only option, that makes me sad because the risk is it’s going to go from stiff to overly hypermobile again and popping my shoulders out on a regular basis isn’t fun. Neither is having painful, restricted use of one arm, so whilst it’s a tough choice, I have to do it because I can’t use my wheelchair with one arm and I need to have my mobility.

Lung Physio – My Good News

So as you knew I had been referred up to Kings College hospital by Dr Gall, I had completed the Lung Function tests and it was decided then that I would need some kind of physiotherapy.  I had been going along on a few occasions, notably on the first Sarah my nurse/physio had noticed just how flexible my rib cage was.  She explained that a lot of my pain could be from costochondritis and to learn to manage the pain with shallower breathing without hyperventilating.  Over the time I was given homework exercises to improve the amount of air I was able to take into my lungs, this would in turn hopefully improve my PoTs, or maybe the number of “turns” I was having.

One of the first exercises I found was really easy, in fact it was quite relaxing, and I used it at bed time, however due to my shoulder injury we had to adapt how I could do it.  Once we mastered how I would be able to this exercise she found the amount of air I was taking in was improving, the only concern was the flexing in my ribcage.  Can’t win everything I suppose, PoTs improvement , EDS loses.

The second exercise involved breath holding, now I couldn’t get to grips with this, it was similar to one during the lung function test and even though she gave me a sheet to take home, I just kept getting so confused and flustered, that my breathing ended up so out of synch i would end up struggling for breath, so she told me to give up with that one.

When I went back again, she was happy enough with the original exercise, that she felt this one alone would improve my lung function BUT i needed to keep practicing until I next saw Dr Gall.  With that agreed she decided to discharge me from the physio team but said that if I felt I was going downhill again I could call for an appointment.  So after a matter of three months under their care I had already succeeded in a positive outcome, i was really pleased with myself and knew that I just needed to keep up the hard work.

Who knew breathing was so difficult and complex, I will never take it for granted again!

Wish List

Now I need to use my wheelchair again due to the pain levels.  I have seen two pieces of kit that I would love to get, you could call them accessories but they aren’t. One of them would be essential for me to use my chair especially if I wanted to go out solo because with my shoulder damage I am no longer able to self propel.  Now this leaves me with a dilemma.  Do I get rid of my lovely wheelchair and get a power chair, scooter or something else motorised or do I buy this clever piece of kit.

This is a Smart Drive

Ive checked the price here in the UK and it retails at ¬£4300 excluding VAT, yes now you’ve picked yourself up off the floor, thats right !!  Just under four and a half thousand pounds BUT a new decent powerchair would cost five thousand, so why not keep my chair and add this amazing piece of equipment.  It means I can use my good arm and with the wonders of bluetooth slows down and adapts the speed, clever huh??

I have no idea how I am going to be able to get one of these, I see people gofundme, for all sorts of things and Im just wondering, what it, why shouldn’t I, it is for an essential piece of kit and it is not like I have not asked before is it?

The second piece of kit I would love is a Freewheel,  it retails for ¬£375

This snaps to the front of my wheelchair, it lifts off the two small front wheels, so you have the one big front wheel on the ground.  Now making your wheelchair a trike.  I have two friends who have these and they get on great with them.  I have told Andrew I don’t want anything for Christmas, if anyone wants to buy me anything please don’t just a little money in a card to go towards my Freewheel would be great, that is my wish this year !!

So those are the two adaptations to my Ti Lite that I would love to do, I may not love using my chair all the time but I certainly will find ways to make using her easier, by the way her name is Tilly, she is red and goes like a rocket.

Summer to Autumn Transition 

I’ve had such a good summer, as far as pain wise I’ve managed so well.  I had got on top of my pain relief, in fact by the time I last saw Dr Mason when he left I was feeling really positive.  I was coping on paracetamol, the meloxicam and after seeing my new pain guy I had decided to be brave and reduce my patches and try a new pill.  All was good, I had been out of my wheelchair too, yes I was using my crutches, or Andrew to help me but to be honest I hadn’t needed it for anything.  

The good heat had got into my joints and it felt great.  Now the down side of good summers is air pollution, so that means my PoTs was a bit all over the place but I was managing it quite well, when I noticed my symptoms I took a seat, trying not to create too much attention.  Being sick is enough without, face palming the floor, so I have learnt the bum cleanch to start the blood pumping back upwards, or leaning over my trolley if I was shopping in Tesco, I’m sure it’s the lights in there that don’t help !!  Anyway it’s all about the signs and learning to manage because whilst the pain is good, the less time I can spend in my chair the better, all too soon I knew I would be dusting it off and getting it ready.  I just didn’t realise how soon

I think it was the first dew point at sunrise and my pain started rising, feet throbbing I struggled out of bed, next day it was my knees and it just continued up into my hips and back.  I finally gave in and went to see the doctor, obviously Dr M had gone and I needed to choose who to see, so I picked one of the senior partners.  When we met he was fab, his concern is the level of deterioration, but he refuses to leave me in pain, he is happy for me to increase my patches if need be as I feel they are the only thing that works.  We agreed to try a newer tablet but to be careful as the last one had caused horrible side effects, I was to keep a diary.  He gave me everything I requested and asked me to return in a couple of weeks with feedback, I left feeling positive, he had listened, given me a good solution to my issues including my gastrointestinal problems and then offered me ongoing support, really important with chronically ill patients, too often I feel I am given a piece of paper and sent on my way.  He really gave me hope 

So yes I might need my wheelchair again, my flare up has been over a week now, I’m exhausted as I’m not sleeping well, the new tablets are awful, they make my insomnia worse, upset my stomach and hurt my muscles, I have a feeling those are for the bin too but I need to ask the doc first, on top of that my headache is awful, I’ve developed this horrible pain where I can barely hold my head up, it’s best when sitting with my head supported on pillows, or a headrest, otherwise it just makes my headache intolerable.  My Botox isn’t until December due to Dr W’s heavy work schedule so I think I’m going to need lots of migraine meds.

I think autumn and winter are going to be really tricky, roll on next summer, in the meantime I might hibernate.  Who wants to buy me one is these??