Flying & Ehlers-Danlos

Last night I read a blog post by @jilly you can read it here I found it absolutely fascinating and could relate to quite a bit. I tweeted Jilly and told her I really liked her article and I thought I might write my own post having travelled twice since my PoTs diagnosis and with an upcoming trip planned. I will be naming the airports used, airlines, their facilities, good and bad.

Now within a matter of days after my diagnosis in 2013 we travelled to the States with Delta out of LHR, at the time I was using crutches, my hypermobility wasn’t diagnosed but obviously I did have problems with joints I just didn’t realize back then there was a medical name for it. As we got to the desk on the day of travel to check in, the clerk couldn’t have been more helpful I was already struggling to stand, so he immediately arranged “special assistance”. He told me to sit down so I didn’t fall down and proceeded to complete the check in process with Andrew. From that moment on we were taken care of by the Heathrow Airport team, a wheelchair was bought through for me and I had never realized how many special lines there are for disabled travelers. As I was in an airport chair I was asked to get out for the scanning process, which was ok but the stresses of travel had made me really tachy, so I was unable to stand for long. We were then taken to the Special Assistance area to wait for our flight, now Andrew could have nipped off shopping if he had wanted but this quiet zone was bliss. Not long before our flight they came to get us on a golf cart and took us all the way to the gate. I was super impressed by this service, it’s free you just need to ask for it!

At the gate there are special seats for disabled travelers, right at the front and once again, once it’s time to board, yes it was my turn first. So the ground crew called me and another lady, there was no rushing us, they gave us as long as we needed. Once we got to the plane, the question was asked would I like the transfer chair, I had my crutches so walked/hobbled to my seat. Thankfully the seat configuration was such that it was just Andrew and I to one side, so should I need to get up it was nice and easy. However why do people stare when they see someone obviously struggling and in pain? The crew were great, they kept coming to check on me, topping me up on fluids and snacks, it was a great first experience. When we got to Atlanta we had to be last to disembark that’s the way it is with special assistance, the help was already waiting and I was soon being whisked to immigration, again with all the special lines, we were through ahead of the rest of the passengers. I was really grateful for this help, I don’t think my PoTs would have coped with the stress of the stopover, Atlanta is a huge airport and you need to take an underground train. The helper was fantastic and really looked after me. We were soon at our next terminal and ready to board our next flight, again same process applied, on first, off last. Wheelchair was again waiting at Orlando, he took us all the way to the car hire company.

In summary I couldn’t fault this outbound trip I had been nervous but once we had got to Heathrow, the ground crew agent really assessed the situation and just took control.

On the return journey we got the Orlando to Atlanta flight no problem, however there was no chair waiting for me, so we waited and we waited. With 20 minutes until our plane was due to take off I was now in full panic mode and tachy. Knowing we had to get on the underground system and round the airport I felt this was going to be impossible. Somebody finally arrived to take us and the race was on, poor Andrew was trying to keep up, and the wheelchair pusher was just off. By the time we got to the plane it was pretty much closed and I think they were ready to offload our cases, but I explained they had left us at the gate. They were so apologetic, they radioed down to leave the luggage and we were whisked onto the plane, however they didn’t put us into our seats, we were given an upgrade to Premium Economy, I was pleased with that, that was one of my most comfortable flights, my hips didn’t hurt, I could stretch out that little more. If only I could always travel that way 😜. When we got back to Heathrow the Special Assistance team excelled themselves again, a group of us were picked up and taken all the way to Border Control, again there is a special line so no lengthy queuing.

My first trip after my PoTs diagnosis was a really positive experience, but I used as many of the tools available to me.

Fast forward to September 2014, I’ve now been housebound for nine months, my health is very poor and in August I was lucky enough to be funded my own wheelchair by TVP. So we have he trip of a lifetime planned, it’s been in the pipeline for a year. I had been preparing everything, medical licenses for my drugs, complicated but necessary. Special assistance booked for the journey, essential as now I had received my Hypermobility diagnosis, but not the full EDS yet (although I did know I had it).

By the time I was dropped at the airport I was tearful I was actually scared of this trip, I was in my own chair, traveling to the East, I was very ill, I didn’t know how I would cope and to cap it off some of my medication had run out a week previously but the pharmacy had been unable to supply as there had been a problem, so I was going to be “cold turkey” off some of my meds.

We checked in, we were sent to the special assistance line, good start. First up, two able bodied men in the line? No idea why but they went first anyway, maybe they had an aversion to the long standard queue. We had hours and I wasn’t going to worry. So once we were checked in, the procedure regarding my chair was explained, I would go to the door, it would then be taken, bagged up and put in the hold. We didn’t really need the special assistance team as I had my own chair this time. If we wanted to use their quiet zone we were more than welcome though. Next up was security, I will mention this as last year I had been in an airport chair and was asked to get out. This time I was left in my chair, I was patted down, scanned with a handheld scanner it was all very simple, they do ask you to move about and if they cause you pain you need to tell them. We cleared security within fifteen minutes at Heathrow it was amazing, great service from them.

Next up our flight, we flew Singapore Airlines, now I had read great things about them so was really looking forward to this. Loading was good, again boarded first, my chair was taken, quickly and with no fuss. The staff then helped me to my seat, now my only criticism is they could have moved me closer to the door, not upgraded, but the same class seat nearer the exit, I was a long way back. Then the issue I was in a middle seat, so once seated and my crutch taken away, next person arrives and sits down. No idea he is seated next to a disabled person. In fact on both flights I appear to have been seated next to people with narcolepsy, just my luck. The staff were great they did come and check I was ok, they kept me hydrated and gave me fruit snacks. However after three hours my SI joint started playing up, then my hips, I was in agony. Thankfully I bought enough doses to double up my pain relief on the flight, but it didn’t help. I had to ask the stewardess to wake my sleepy co passenger so I could get up. I got Andrew to help me to the loo, my hips were creaking and cracking. Long haul flights are not good for ehlers-danlos sufferers in my opinion, or at least not for me. By the time we got to Singapore we had been flying for over 13 hours, the crew had done their best.

Once we got landed, they reunited me with my chair, now this is where Singapore Airlines let me down. My chair was not bagged, they had run out at LHR, so my beautiful brand new £3000 chair, was now scratched and damaged. There was several nasty scratches on the main body and the right hand brake was completely bent. I was really upset, but what could I do? I was tired, in a strange country and just wanted to get to my destination.

If you are a regular blog visitor you will know how amazing Singapore was, now always the most disabled friendly place, with the exception of the MRT, that’s got to be the best thing ever for disabled travelers!!

So it finally became time to come home, we had checked in online, I had moved our seats as far forward as I could, but again this wasn’t that far. I lived in hope that when I got to the desk someone with common sense would take over, oh no, we were left in the seats I had chosen. The loading process was much the same as Heathrow, however Changi airport is huge and I specifically asked them to bag my chair explaining the damage that had occurred on the outbound trip.

Again he flight was hard work, little miss narcolepsy didn’t help sitting next to me, being so immobilized for so long isn’t good for my SI joint and hips. I tried to sleep but that was fitful and uncomfortable. Again the crew tried their best checking in on me regularly, which was kind and supportive, what I needed was to lay down, stand up, move about, all the things I couldn’t do being trapped in this tiny seat.

So Singapore Airlines in retrospect when you deal with a wheelchair traveller, respect their needs, above and beyond anyone else on that aircraft. Do they need to mobilize? Should they have additional leg room? How can you make them more comfortable? Finally that very expensive tool they use to get from A to B, that pride and joy, yes it is my pride and joy, please look after it!! Because you didn’t and you didn’t say sorry, you didn’t care and that makes me sad!

So next week as I am due to travel to with Delta and Virgin I wonder what this journey holds for me and my wheelchair, I will be reviewing my experiences 😊

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Lots of Letters

Since my last post all my time seems to have been taken up with dealing with incoming mail. Who knew being chronically ill was going to be such a full time occupation? First up at the end of last week I received the follow up appointment for the RNOH, which was actually for October 2015. I had to double take the letter initially, at first I thought I had missed the appointment, then I realized it was for a year later! How would I know what I would be doing next year? So I filed the letter in my big pink health file and just forgot it.

Next up I received the assessment forms for the rehabilitation course at the RNOH. Now these forms were quite in depth and tricky, they took me a couple of hours to complete. They asked about my current health and how I would assess myself mentally and physically. My assumption was that my consultant had already completed her assessment and this was my turn to have my say, after all there were two options for the rehabilitation. There was a hospital inpatient stay or a hotel off site program, now depending on how I and my consultant felt I was this would depend on where I would be offered a place.

After that I received a letter asking me to get in touch with Wexham Park Hospital to arrange my Flexible Sigmoidoscopy, oh boy, I was dreading this! I gave them a call and the appointment was soon booked for late November.

My final piece of correspondence came from the DWP, they were requesting a face to face interview at the job centre, it’s called a compliance interview. Now bearing in mind I’ve just had a PIP medical assessment this totally upset me. I called the job centre and was greeted with a voicemail, I left a message asking to be called back. However it has taken several days to get in touch with a human being. Once I finally got to speak to someone, she was quite sweet and said she would do her best in the circumstances, to carry out a telephone interview. So in the next 24 hours she is due to call me back to carry out the full interview. I don’t fully understand what or why this is different to the assessment last week, but each and every department is different I suppose. Maybe it’s because my doctor put my Ehlers-Danlos on my sick note this time? So I will report back once I know what is going on.

So that’s been my week of administration and paperwork, it a bit full on when my brain is on a permanent go slow, everything takes me so much longer and I can’t think straight so my head ends up hurting by the end of it all.

Let’s just hope for lots of positive outcomes 😊

Shoulder – Update

Thought I would give you an update, seven hours after visiting the hospital there was an almighty crack from my left shoulder and guess what, it was fully back in. The odd shaping is no longer there and it has much more range of movement. I still have pins and needles with quite a bit of a shooting pain in my elbow but I can cope with that, it will settle.

Andrew was horrified by the sound that came from the shoulder, so it was obviously still sublaxed when I was at the hospital. I went onto the Ehlers-Danlos UK Support Forum and there was mention that subluxations can’t always be seen on X-ray, only full dislocations. So this may be the problem we faced, it looked out, but wasn’t fully out.

I have decided I’m going to join EDS UK and get their fact sheets, so I can take them to the doctors and hospitals when I have problems, because I don’t appear to be able to explain myself fully and they don’t understand my condition.

So today will be spent strapped up, but the good news is at least it’s back in it’s socket fully today 😊

Sublaxed Shoulder

When I woke up I knew something wasn’t “right”. Maybe it had been from all the pulling and prodding from the hospital visit and then the ATOS appointment, but I hadn’t done anything else. No accident, or fall, it hadn’t popped out of place, but boy it was hurting. So I called the surgery for an appointment, my plan some anti-inflammatory drugs would soon calm down any problem that maybe in the shoulder.

I called up and was offered an appointment for 11:50am, perfect I could get ready, Andrew was going to work and then he could take me to the doctors. I had made a note of the three things I needed to ask, my shoulder, anti inflammatories and I needed a new sick note for the DWP. My memory really was that shocking now.

We headed to the surgery and it was empty when we arrived, no sooner had we sat down then Dr Mason called us through, as I pulled out my piece of paper he reminded me it was an emergency appointment, I explained I was having memory problems and it was to remind me what I was there for especially the sick note! He was fine about that. We explained about the Tuesday appointment at the Stanmore and he was pleased that the formal diagnosis was finally in place.

I asked if I could have some big anti inflammatory tablets and explained that I thought I had sublaxed my shoulder again. I told him about the examinations on the Tuesday and again on the Wednesday, and it being too much on my joints. He said he would rather examine me this time and not just dispense as I appeared in so much pain. By the time both Andrew and the Doctor saw my shoulder they couldn’t believe what they saw, it didn’t look right, in fact it was very odd. The doctor told Andrew to take me straight to A&E he believed it was still dislocated, I was aghast, yes I was in agony but that was normal. He gave me tablets and my sick note and we left.

We headed off to the hospital, like we haven’t been there enough in the last week 😳. By 2pm I was all checked in and triaged, the plan was to put me through the Green area which only had an hours wait. Roughly 50 minutes later a doctor called me through, she asked what had happened. Now explaining EDS is dull, but saying you’ve done nothing is even worse. She looked at me and said she thought it was dislocated, so would send me for an X-ray, she would organise my admission and sort out getting it reset. This scared the living hell out of me. So of we trundled to X-Ray, two pictures later and we headed back to A&E. We sat in the waiting room for less than five minutes and I was called back in again.

The amazing news was it was back in, my sublaxed shoulder, was no longer dislocated despite two doctors being convinced it looked out. Thank goodness it didn’t need manipulating, however they wanted to put it in a sling to stabilise it for a couple of days. Then I need to get it moving, to try and exercise it. The relief was immense, however, the pain level is still really high.

So it’s been a bit of a rough day, we can’t decide if we should have a reserved parking bay at the hospital if our current run of luck keeps going 😦

My ATOS Assessment Experience

I submitted my form mid May so like I have already said when I was offered the home visit I was shocked. I got a call the evening before Susan, my medical assessor, was due to arrive. She was just checking everything was still ok for the next day, I assured her, it was all good and we were on our way back from the hospital visit. I’m a member of various forums and have read all the scare stories about people’s assessments and was really not looking forward to it, it’s safe to say I was terrified.

At 9am after next to no sleep, I was a nervous wreck! The doorbell went not long after 9, wow she was prompt, Andrew went down and let her in and came up to get me. After being poked and prodded at the hospital I was really uncomfortable, my pain relief hadn’t kicked in either.

As I entered the front room I was greeted by Susan, she was a warm, lovely lady, who instantly put me at ease. She told me to get myself as comfortable as I could first, I explained about the hospital first and she said how she had done some research on Ehlers-Danlos Syndrome so she had an understanding on my condition, I thought that was lovely. She then ran through what her role was during our meeting, that she was there to assess me, how much I can do, not my health or my condition, but how it limits me.

We went through everything step by step, it was all very precise and it wasn’t rushed, very much like the hospital the day before. It was good because when I couldn’t find my words I wasn’t hurried, I was given time to think, I could process my thoughts. She went through how each condition affected me and of course I found it upsetting, but the real tears came when she asked about my work. I didn’t expect it, she asked a question and then out of nowhere I couldn’t speak, Andrew had to take over, I had lost everything because of these conditions and she needed to understand that. It wasn’t just my job, it was my beloved Specialing and I think she knew by the end how much I loved my role there.

She asked me to do some physical movements which I wasn’t too good at, due to the stiffness from the previous days medical testing. Then she asked me some cognitive questions as I mentioned my brain fog and memory issues, well I managed to get a couple of those wrong 😔. I wasn’t doing very well

By the time we got to the end she had pages to type up, and that’s what she has to do, type up a report for the DWP. The report is then sent to the decision makers, and then in approximately six weeks time we will know if I have been successful in my claim for PIP. In the meantime it’s back to being just a waiting game, we just have to hope the decision makers see sense.

My experience of the ATOS assessment was it wasn’t as bad as all that, I was lucky it was at home. I didn’t even ask for a home visit it just happened that way. The lady who came to my home was very kind and compassionate, she had looked into my condition and I thought that was very good, it meant she had an understanding of what she was going to find when she met me. To anyone who is going to have an assessment, don’t read and believe all the scare stories, not all the assessments are as bad as that! Good luck I hope you get an assessor as nice as mine 👍

Visiting the Stanmore

As with all my hospital appointments I was a little nervous, this was a biggie in my mind Ehlers-Danlos syndrome was the primary condition. After a rather fitful night we lazed around all morning, Andrew was still not at all right, in fact by mid morning I was debating leaving him at home. However he insisted he wasn’t going to stay, that’s been the one constant about my health condition, since the day I fell ill Andrew has been by my side, he’s been to every appointment, he’s held my hand through every procedure, I don’t know what I would have done without him! So the thought of not actually taking him to the appointment filled me with dread, like I say it was one of the biggest appointments, ever!!

The pair of us slowly got ready and soon it was time to hit the road, it was an hours journey away and I had already checked the traffic thankfully it was clear. I had also tweeted the Stanmore to check their parking charges, I didn’t want to get there to find we had no change, guess what, they don’t charge for any of their parking!! We made it in good time and I booked in ten minutes early, as usual with an NHS clinic we had to wait, but I do expect that.

We were called through and I was surprised not to be greeted by the consultant who I was booked to see Dr Mittal, now you will have to forgive me I have already forgotten the Drs name who I have seen but her first name was Mirjiam I think? Anyway she explained that she was part of the specialist Hypermobility Team and would be assessing me, she said the letter they had received had been rather “scant” with information so would I like to explain why I thought I had Ehlers-Danlos Syndrome.

I had made notes while Andrew had been in hospital on Friday so I pulled those out and she was pleased I was so prepared, I gave her my historical symptoms list, current symptoms lists, my prescription list, we then went through my medical history, she was making pages of notes. We were also just chatting away about pain levels, how I’ve been living, what I eat, or don’t more to the point, why I use crutches and a chair, about how the headache turned up one day, then the PoTs got diagnosed, it’s a long story but it’s all part of me now.

Soon it was time to undertake a physical examination, she asked me to hop up onto the bed, she wanted to start by checking my hands and arms. I waddled over and she was soon looking carefully at my scraggy little hands, since my weight loss they look so tiny, a few joints were tender but not painful. She then asked me to do the Beighton score tests, of course I marked fully, then my elbows, again full points. We hadn’t even got off my upper body and I had six points. My skin was really stretchy and she also commented how velvety soft, such a complement but a marker for EDS.

Then round to my back, shoulders, neck, spine, hips, all very ouch as were expected. I then laid down and she checked my legs and knees, funnily my knees aren’t as Hypermobile as the rest of my body, so I didn’t score on them. She asked if I used to be able to place my hands flat on the floor, with my knees locked, which I used to be able to do before I fell out of the loft and damaged my back, so I scored another point. My final score therefore was 7. My Beighton Score on the Hypermobility scale was 7/9 to be diagnosed with Ehlers-Danlos Syndrome you need to score 4 or more. Well I rocked that test 🙂

I didn’t know wether to cheer or cry, I was relieve for her to say the words to be honest. She then agreed that it would be beneficial for me to be sent on the Stanmore’s 3 week Rehab program which is based at the hospital and teaches about pain management, physiotherapy, diet and occupational therapy. It will be hard work, but chronic illness is hard work so I agreed that I would like to be referred to that, yes I hate being away from Andrew but this might make his life easier if I’m not so dependent on him. Next she wanted to do some X-rays on my hands and feet, she was concerned that I may have an inflammatory condition on top of the EDS.

She double checked we had no questions, we had handed over all the paperwork we needed to, including some MRI images that were taken last year of my spine, this would help them see the damage I did when I fell out of the loft. We were then sent to X-ray, it was all too simple. We had been with the Dr well over an hour, there had been no rushing, no clock watching, she had taken her time with Andrew and I really made us both feel valued.

So thank you to the Royal National Orthopedic Hospital, Stanmore you got it so right today, you put my mind at ease when I was so worried.

I may have been diagnosed 46 years late, but as they say better late than never.

ATOS called !!

After what has been the one of the most stressful weekends for a long time, my mobile phone rang from a blocked number. I expected it to be the doctor, or the carers and was really thrown when the young lady announced herself as from ATOS and could she take me through some security questions. That immediately set my heart rate racing and I was trembling just speaking to her, I had no idea what the hell this call would be about. My ESA claim was made in February and my PIP claim in May, so I wasn’t expecting anything this soon to be honest.

She explained they were in a position to offer me a medical assessment and would I be available, on Wednesday between 9am and 11am? I asked where would this assessment be, it was going to be a home assessment! Now let me explain, home assessments have to be requested, almost argued for, and I haven’t even got to the requesting one stage. Was this all too simple? I of course said yes I was available so she gave me the details of the lady who would be attending the house and the telephone number if I needed to cancel.

Now despite everything currently going on, Andrew’s health issues and my visit to the Royal National Orthopaedic Hospital to deal with, this was just as important, so Wednesday morning is now set aside for my medical assessment hopefully I will have more details in relation to my Ehlers-Danlos diagnosis, although I know it’s more about how I’m affected day to day than what I’m diagnosed with.

I still can’t believe that after only six months I’m already receiving my medical assessment when I know there are claimants after a year who haven’t heard a thing.

I’m nervous as hell and worried sick, but I can only tell them the truth, show them how my homes been adapted, and explain how much pain I live with. I will have Andrew here to support me during the interview and assessment process, thank goodness! Let’s hope common sense prevails and we get some financial help, the ESA runs out very soon and without this I don’t know what we will do, so everything will hinge on Wednesday. Keep your fingers crossed for me, although I’m sure there are lots of people just like me out there.