Getting a Call Back

As I have mentioned before my mobile rarely rings and our house phone never rings, unless it’s cold callers, so on Tuesday when my mobile rang with a London number a answered it rather cautiously. A ladies voice at the end explained she was from the Gastro-Intestinal Unit at the Royal London and was returning my call! Good job I was sitting down, I’m not sure I’ve ever had a call returned lol

She asked how she could help me, so I explained about seeing my GI consultant in December and him referring me and just wanting to confirm that they actually had the referral? She asked who I was to see and which hospital, she looked me up and then explain there was no referral, my heart sank. She asked when it should hav been done, I told her I had seen Dr Levi on the 22nd December and he was going to have it faxed across as urgent although my copy of the letter was dated 31st December. It may have been faxed, it may have been posted, I had no idea, I explain briefly how poorly I was and that it was really urgent due to the weight loss. She said she would email the Professor as he may have it on his system and be dealing with it already. I then asked how long urgent appointments take. She reassured me by saying we have cancellations this week, next week but routine appointments are in April. I told her about my 39 week wait to see my Neurologist, because of a lost referral, and said I couldn’t wait that long for this appointment, she said it wouldn’t be that long! t felt a bit better for her words of advice and support, she told me not to worry to leave it with her, she had my number if she needed a copy of the letter she would contact me.

I haven’t heard from her since, so I am hoping she has found my referral, otherwise on Monday I might give her a call and find out what is going on, but at least I know they know of my existence now.

Early Wake Up Calls

For the last five mornings I have been awake around the 4am mark, I’ve got loads on my mind, Andrew’s upcoming operation, my assessment for rehabilitation at the Stanmore hospital, a funeral plus further hospital appointments. So heading to bed is a bit hit and miss in the sleep department, I might be able to drop off, or I can take ages to get to sleep, but then I find myself, awake really early and my mind is racing away with a million worries and I just can’t switch off.

This morning (Friday) the day after the pre-assesment appointment for Andrew and the funeral, I was awake at 3am, this was the earliest so far. Now i had managed to get to sleep earlier (around 10pm) which was good but it had been a stressful day and I was exhausted. Not to mention during the funeral the near collapses because of all the standing for the mass, but I refused to let EDS and PoTs beat me, so I stood, prayed and paid my respects. So at 3am i tried my hardest to stop thinking, to think happy thoughts but I was worrying about today’s assessment and next week’s operation. After about two hours of wiggling around and getting really frustrated I gave up and went downstairs. I sat in the dark and just listened as the clock ticked away the minutes, then hours. I decided to grab the laptop and type up a couple of insignificant blog posts and check social media. With that done I closed the lid and started yawning, I was tired, it was now 6.30am not the time to be tired I knew we needed to be up early to leave for North London for my 9.30am appointment.

Suddenly I was hit by this wave of emotion and I burst into tears, I don’t know where it came from, I suppose the few lone tears at the funeral hadn’t been enough, the build up of lack of sleep was getting to me, the worry of Andrew’s surgery is just too much, I just broke down. In the dark living room I sobbed and sobbed, nobody heard or saw but I needed it out. I felt angry at the life I had lost why was I like this? At that moment was so angry I wanted to go and throw every piece of equipment and every medicine out of the house. I had had enough of EDS, I was just fed up, I didn’t need it all two years ago so I could manage now, couldn’t I? Why couldn’t I have something that was curable?  Why something that was so bloody complicated most of the medical profession have never even heard of it!  Then I was crying about the funeral it had reminded me a little of my Dad’s and I was missing him, so I was longing for my father, I was angry for love lost! I was scared about Andrew’s surgery and I’m not worried to admit that, carers aren’t meant to get sick, when they do, the person they care for ends up in a tailspin, so its normal for this to happen. For twenty minutes I just needed to let it all go and I did, did I feel better? No not really but I got it off my chest!

So for the next five days/nights I am expecting lots of early morning wake up calls, until this round of hospital appointments are over, then maybe, we can go back to what we class as normal service.

Making Good Days

After being laid up all last week, I was going stir crazy, Friday night we enjoyed a quiet evening in to allow my back to heal and just let Andrew take some time to himself. As he got ready for work on Saturday I asked if I would be able to go out at some point and he of course said yes. To test the waters of how I am going to cope I will always attempt a trip to the supermarket, it’s in my wheelchair so not going to cause me any strain. It’s more about the lights in the shop triggering my headache back to unmanageable levels, my joints not being happy in the chair, or just feeling to woozy to even tolerate being out. Needless to say it all went well, we grabbed some bits and went home.

We got up slowly on Sunday and couldn’t decide what to do or where to go. For Christmas, Andrew bought me a new lens for my camera and I thought it might be nice to go out, just got an hour or two. Get some fresh air and try out this new bit of kit. We were in no rush and after a couple of hours discussion we headed to Richmond Park. Andrew had wrapped me up warm, filled my hot water bottle but it was a lovely clear day. The park was so busy, full with joggers, cyclists and families walking their dogs. We parked up (they have great disabled parking & toilet facilities) and soon we were heading back to were we had seen the beautiful red deer. We got as close as the rules allow and snapped away, it was an honour to share the same space as these majestic creatures.

The park was beautiful too with views over London, being able to see the Shard and the BT tower. You suddenly realize just how close you are to the hustle and bustle of a major city and yet here you are sitting next to a red deer herd.

The wind started to whip up and we headed back to the car, poor Andrew having to push me uphill. I was getting really cold now so when the car park fell into sight I will say I was relieved. Andrew got me back into the car and then went to get hot drinks before we headed home. It had been a good day.

Sometimes despite the pain and illness, you just paint on a smile and make it a good day. Make a happy memory because I don’t want my next 12 months of memories to be all hospitals and tests. It has to include love, happiness and days out.

Dodgy Discs

I’ve always known I have a bad back, I blame carrying a heavy baby when I was quite young. Then falling out of the loft and fracturing my back won’t have helped, or falling down the stairs head over heals twice. So when I had an MRI late last year and it was reported that there was a retrolisthesis of the L5-S1 with degeneration, I was left scratching my head. A what of what? Of course this was found in my medical notes and I had turn to google to find out what was wrong. It’s dislocation of the disc at the base of my spine onto the sacro-iliac joint, obviously the degeneration is to do with my osteopenia problem. No problem I can cope with this, the dislocation is normal with EDS, the degeneration I already knew.

Last week as we were sitting down enjoying a quiet evening, I was just resting and there was a sudden pop and that was it. I felt my back just go, the pain seared through my back and hips, I rotated onto my left hip and from there wasn’t able to move again. Andrew felt he needed to get me laying flat so started to move me, wow I’m used to pain this was horrific! He got me to my feet finally but I had pins and needles in my right leg and foot, like it was waking up from being numb. He then suggested a fireman’s lift upstairs, I told him he must be mad if he thought I would cope being bent in half. So we agreed to me very slowly walking (waddling) up the stairs. It took a while but with a lot of tears we finally made it. He put me to bed with my hot water bottle to assist with the pain, along with double dose pain relief.

After a terrible night due to pain, I then spent the next day in bed, I really couldn’t move, poor Andrew had to keep coming home to help me. Making sure I was as comfortable as possible, had drinks, could get to the toilet and was given my medication. At 5pm he came home as he came to sit on the bed I moved my hips to the left, a small wiggle so he could sit down. There was a loud crack and with a hopeful look Andrew said “was that it?” I tried to sit up using my bed guard and yes I could move. I had relocated the disc again, I kept saying for 24 hours I felt it needed clicking back in, but no matter what I did, it wouldn’t work. The most insignificant movement had done it and I was relieved.

Very carefully I got up for the evening, the agony had dissipated, but was left with a dull ache, I could live with that for now. Since then I have felt it try to “go” again so I know I will have to be mindful of how I sit, lay and carry things because this damage to my back isn’t fun 😢

Getting Nowhere Fast

At the moment it’s just a case of wake up, constant bed rest, the occasional trip out if I’m strong enough and then back to bed, avoid all solid food and doctors, then back to bed to rest again.  I just don’t appear to be getting anywhere very fast with my consultations at the moment.  With all the time I had on my hands over the last few days I managed to do some research, when had I last seen my various consultants, requested referrals and/or organised appointments.  What the hell was going on?  I needed to get on to Drs and Hospitals as I am sick of being left at the bottom of the pile, why is my health worth less than any other patient?

First I worked out I last saw my Neurologist privately in May 2014, I spoke to my GP requesting a referral to Charing Cross Hospital on 6th June which he had agreed.  I chased up that referral on 25th November and haven’t heard another thing about it. I called the surgery a couple of days ago, left a message and was told someone would call me back.  As expected no call was received, no shock there really, so I took matters into my own hands.  I called Charing Cross Hospital and asked to speak to Dr Weatherall’s secretary, I was connected straight away.  After a brief conversation, at which time she confirmed she could see me on the system she passed me through to the booking line.  Well this was a good start, a lovely young lady took the call and was soon explaining that my referral had been vetted by the consultants and she was in a position to offer me an appointment, I asked her when the referral had been received by the hospital.  Would you believe me if I told you 12th January !!  I was furious, I’ve been waiting 33 weeks for an appointment and they have only had the letter 10 days.  I explained this to her and she immediately made me an appointment, the first available was 4th March, I accepted it.  So by the time I attend the hospital it will be 39 weeks from the date I requested my referral to the date of my appointment, this definitely does not meet the NHS constitution’s 18 week requirement.  However I was relieved that I had completed one job on my to do list.

Next I wanted to ensure that the Royal London had received my referral for Professor Aziz, I’m not getting into February to find they don’t have the fax, or a copy of the letter.  I can’t wait weeks or months with this pain or continued weight loss.  So once again I called the hospital’s switchboard and asked for the Professor’s secretary, they even provided me with a direct number, it went to answer phone so I left a message and hopefully will get a call back in a day or two to follow it up.  Otherwise I will just call them back over the next few days.

Finally my PoTs consultant I haven’t seen him since July last year, I was meant to see in October but they forgot to send me an appointment, then when I called for one they were fully booked.  I was given one for December which was cancelled as the consultant was unable to attend, although I couldn’t go either as I was an inpatient at Wexham.  The rescheduled appointment is in two weeks time, Andrew and I are hoping for a referral up to one of the big teaching hospitals that have EDS/PoTs specialist knowledge.  I don’t think it is too much to ask for, if we are willing to travel for the best treatment available, then they should be happy to let us go.

As for my GP’s surgery well I’m just avoiding them,. what’s the point of going to see them?  The GI team don’t know what is wrong with me so why go and see the GP about this problem, I’m on the max strength pain relief, so there is nothing else they can provide me with.  When I ask for help they don’t seem to do anything anyway.  They have their moments when they show compassion and you think you have cracked it with them, then all of a sudden they get it all so wrong.  I was measured for compression stockings in November, guess what, I still don’t have them!  It’s all just pointless it’s like they just don’t care enough.  So for now I feel like I am floundering all alone on my chronic illness journey and I hate it.  I should feel supported by my Doctor, but I’m not, and that is sad.

Hopefully over the next few weeks and months I will have some positive updates from my consultant appointments, I will keep you posted.

Silent Sunday – 25th January

Being Supported

For a week Andrew had this time on his wall planner at work 2:30pm on 14th, he asked me if I had a hospital appointment, he spoke to everyone at the shop did they know of anything, nobody knew about this appointment that he had obviously arranged. So on Wednesday 14th, he came home at 2pm for lunch as normal, and at 20 past said well I better head back in case someone turns up for this meeting. I shook my head, what if he was meant to be in Reading or the other side of London? Suddenly there was a knock at the door, and he had a lightbulb moment, he knew what the appointment was. It was the lady from Carers Bucks, who he had spoken to. Of course he had forgotten to tell me, so I didn’t have a clue, hence being unable to remind him.

Andrew let her in and then got me out of bed and helped me downstairs to meet her, I’d been having a few bad days since our weekend away, so bed rest had been the only option. She was really kind and had some forms to go through, basically to find out how the organisation could help us, both of us. I was so impressed that she had done some research into my condition, so I didn’t need to over explain what was wrong. She then asked various questions about visitors to the house, easy non existent, calls to the house phone, again easy none, help around the house, none. She was shocked that our support network was us, me and Andrew. Yes people offer help but for things like shopping we need to do that ourselves. We need more practical assistance, so that’s what she would look into. Someone to dust, Hoover, do the washing, ironing, strip the beds, all the stuff I can’t do and poor Andrew is too exhausted to do.

Also befriending services and counselling for us both, she could see the toll it has taken on us both. The emotion we both showed at the meeting was raw and hard to watch as we were both quite tearful.

She asked what I used to like to do, I explained my hobbies were very physical, hence why I find my disability so hard. Being a Special Constable, cycling, swimming and enjoying the outdoors, when I now find myself cooped up inside for a huge amount of time it is soul destroying. People have suggested crafting, scrapbooking and suchlike but I’m not that type of person, so asked that she did not recommend it for me, as I might scream! She laughed and made a note, nothing crafty 😜. She felt maybe once winter had gone I might be able to get out and about but in the meantime, find some company for me, someone who could come and have a natter over a cuppa and put the world to rights.

After an hour, she felt she had everything she needed from us, I felt it had been a valuable exercise. I hadn’t realised how isolated we were, how much people expect of Andrew but how little people give back and finally I hadn’t realised just how much support is out there you just need to find it, or be referred for it.

So hopefully now the wheels are in motion we will start to be supported and get as much help as we need and the pressure will be off Andrew for a while.

Changing The Blog Name

I’ve been toying with the idea for a while. When I started writing this, PoTs was my primary condition and was really all I was writing about. As the year went on, more diagnosis’ came through and I realised that PoTs was actually a secondary condition and the Primary condition was Ehlers Danlos Syndrome. So I feel the title is incorrect for my blog.

I’ve therefore decided with immediate effect I will be changing the blog title to

Livingwithedsuk.wordpress.com

If you have this bookmarked or set in your favourites please update your settings. I do hope this change doesn’t cause anybody too much confusion.

Thanks for understanding

Sarah x

Issues with my Tissues

Last week the Community Channel screened the Ehlers Danlos documentary “Issues with my Tissues”. Everyone with EDS has been promoting it, the first time it was shown was at the conference last year, so for all of us to get a chance to see it was fantastic. I personally set the sky box to record, this was something I knew I would want to watch more than once. I also made sure anyone on my Facebook knew about it, after all, it’s all about raising awareness.

The documentary follows Lara, who is the Chief Operations Officer of Ehlers Danlos UK, of course she has EDS herself and it follows her desire to complete the London Marathon. It shows her training, the problems she suffers whilst building up her strength and of course the advice she receives about the risks of actually doing the Marathon with such a chronic condition.

Throughout the programme you saw various people who’s stories came so close to home, the girl who you chat to on Twitter who’s on TPN, that bought me to tears. Although I’m so proud of her, it just goes to prove what fighters we all are, we have to be to get through every day! Little Annabelle’s family who talked about how they cope with their daughters Vascular Ehlers Danlos diagnosis, again we tweet on occasion, such inspirational people. The whole show had me reaching for tissues, at one point the issues with my tissues were the box was running out 😦

So finally despite hospital admissions, injuries and every hurdle thrown at her, Lara started the marathon, the question was would she finish it. As you watched her pound the streets of London, everybody shouting her name, you felt the support alone was carrying her on. I dread to think what pain she was in, it would have been horrific, I can’t walk to the car without my hips and sacro-iliac cracking, so how the hell did she cope? Finally you saw the end in sight and yes Lara crossed the line, by this time I was beside myself, what an achievement! She got her completion medal and was hugged by her family, but what we then heard was at mile 13, she had got stress fractures in her right foot,her physio had taped it up, so had been walking the last half on fractured foot, that of course required hospital attention.

As she summed up the whole thing she accepts that EDS is hard and frustrating, you often feel like it takes your life away, and VEDS often does just that. She explained its ok to have good days and to have as many as you can but whatever you do please NOT to attempt a marathon.

Now if you missed this documentary and feel you should have watched it because you don’t understand my or my fellow sufferers condition enough, then it is showing again tonight at 10pm. So please tune in, it is worth it, you might just understand a little more what’s going on.

In the meantime whilst most days I hate EDS, I’m proud to stand shoulder to shoulder with my friends (and despite having never met they are friends we have a mutual kinship) and say we will not let it beat us, we are strong and we are there for each other.

Autosport Show

Knowing we were going to the Autosport Show I started saving my spoons all week, I wasn’t feeling great anyway so resting in bed and on the sofa for a few days was no hardship.  It’s really tricky when you know that for a day out you know you need to rest for five days in advance, Andrew made plans for Friday night and I explained that I would need to be in bed by 10pm at the latest or Saturday would be a disaster.  Of course the plans had to get postponed until another time, because it’s just not worth burning myself out when I have rested all week.

I headed to bed Friday night, everything was pretty much organised, so we were ready to leave bright and early.  It was going to be a fab weekend, Saturday was to be spent at the show meeting up with all our F1 buddies, especially the group we had gone to Singapore with.  Our intention was to go out on Saturday evening for a bite to eat and then into Birmingham for a few drinks with some other friends who had come up to the city for the weekend.  The roads were clear and we made it to the NEC just before 10am, we met up with our friends and it was like we hadn’t been apart, soon we were bumping into loads of twitter friends.  We really should wear badges with our twitter names on, because later in the day someone would say, you know that was “so and so” and I had no idea.  People must have thought me so rude, but I really had no clue who was who!

 

We saw the Live Action Arena show which was fun, but a bit repetitive on previous years, if we go back next year, I will not bother going to see it!  Once back in the main show we went off to see the F1 cars, Paul Oz’s stand with his amazing paintings and skull-ptures along with the collaborations of JLF Helmet Design and Badger Composite, sadly F1 Racing Gold wasn’t on the stand so I still didn’t get the chance to say Hi 😦

I had taken my wheelchair panels with the intention of getting David Coulthard’s signature, I had missed him in Singapore, and wanted to add him to the collection.  As he went on stage he got whisked past me but he promised to come back.  When they finished, the security guard kept saying to him, she’s here.  he finally came back to me and said I’m so sorry they were calling me I had to go, I said thats absolutely fine, thank you for coming back!  I explained about the panel and about Singapore and thanked him for signing it finally.  He was lovely, Andrew even got his book signed by him.

We then went for a bit of a wander around the rest of the show, Andrew wanted to get some photos of the Performance Cars, we looked at various merchandise, although we had been buying bits and pieces all day.  Andrew also signed up to Project Brabham and we were lucky enough to meet David Brabham.  As the show was quietening down we needed to get a couple of photos done for some projects that are ongoing, we needed to head back to the F1 cars.  With that done there was one stand left to head to and then we were finished, we needed to say goodbye to Paul Oz.

Our plans changed slightly as everyone was hungry, we decided to eat earlier and out of town, so Andrew suggested going to Peachy Keens, a worldwide all you can eat buffet.  The only problem was we had such a good time and it took so long, we finally left there at gone 10pm.  We all got into Birmingham at 10.30pm and checked into our hotel, it was too late to go out for a drink, so we let everyone know we wouldn’t be seeing them.  We went to the hotel bar for a nightcap instead and reflected on what a great day it had been, albeit for me an exhausting one.  An hour later we were tucked up in bed and Andrew was fast asleep, why is it no matter how exhausted I am, insomnia always plays up, I was really cold, despite having my hot water bottle, I was in pain, even though I had taken all my pain relief and it was a strange bed, so I was uncomfortable.  I read for an hour until my eyes grew heavy and then I finally succumbed to sleep.