Deja Vu

The events of the last 48 hours have left me in no doubt that I will probably never go into hospital as an admission for my condition ever again.

Sadly things have been going from bad to worse recently and I woke up yesterday morning and was violently sick. This is really unusual, something I don’t do. So it was a bit of a warning signal. It was 7:30am and as usual I had woken Andrew up, something I always end up feeling guilty about. Anyway once I had finished being sick Andrew got me back to bed and I drifted off to sleep, my morning was spent off and on being poorly.

Andrew came home mid morning to check up on me and I wasn’t doing too well, I had taken a tumble so he got me back to bed, made sure I had everything to hand and promised to be back within a couple of hours.

As promised he was back a couple of hours later, I wasn’t any brighter, in fact I was deteriorating. That was the first time the word hospital was mentioned, I was pretty “out of it” but sort of agreed which is a big step so I know I was ill.

At around 4:30ish I needed the loo, as I headed back to bed, I had another funny turn. This was another episode of the Reflex Anoxic Seizure that I had first experienced at Easter. Luckily I always carry my mobile on me and once I came round I was able to make my emergency call. Within two minutes Andrew had come and scooped me up from the landing floor. I had bashed my left hip and elbow, knocked my head but thankfully nothing more than that! Again how I hadn’t tumbled down the stairs I don’t know? My knight in shining armour made me put my arms around his neck and just lifted me up and placed me back into bed.

He immediately dialed 111, we aren’t glory hunters and didn’t want 999 and blues and twos to the door. Advice first from the NHS to see what they thought. After several questions Andrew finished the call and was trying to put some PJ’s on me, making me half way decent. I still looked a state (and still do) but to be honest I didn’t and still don’t care right now! Then he just needed to keep an eye out for the ambulance to arrive and within fifteen minutes they were here.

The loveliest crew were soon in my bedroom. Lucy and Martin, but with less than an hour until they were due to knock off, they didn’t rush us, they cared and nurtured. Whilst one didn’t know what EDS was the other did and for that I fully understood and respected the shared knowledge. By the time they got me to the ambulance we had built a lovely rapport. They knew about “cluster headaches” and Lucy wanted me to try oxygen to see if it would help. So we gave it a go. It didn’t help so to help with the pain and for the rest of the horrible journey I got entonox. For the first time in three years I was floating, painless … It was lovely. Such a shame it was only for about ten minutes 😦

Booking in at Wexham was an experience I haven’t been there since 2011, it’s changed so much. The first nurse kept flitting, it was almost like he was too busy to care, I had too many syndromes for him to be bothered at one point. They took blood, by putting a “tap” into me as the phlebotomist jokingly told me. Then that was it, I was whisked off to the resus unit.

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And this was where I stayed for over six hours!! The first nurse I saw asked me why I had turned up. So I again explained what was wrong. I told her about my PoTs, what’s that she said, so I explained, she’d never heard of it, so I explained about my Joint Hypermobility diagnosis and that I was waiting for an Ehlers-Danlos Syndrome diagnosis, again never heard of it. There I was in agony, ill and trying to explain to a nurse my medical conditions. So what has she been training all these years for?

A few more nurses and finally a doctor came to see me. So I end up going through the whole days events again. This will be about the eighth time I have explained what’s happened. Also the Resus is really noisy, pain is 8/10 on the pain scale if not worse and I’m under the brightest fluorescent light and every bedside alarm in the ward is chiming. So I can barely focus or concentrate, my brain fog is messing me up. So trying to get everything out in some kind if order was really tricky.

So the doctor is being given a breakdown of the last three years and the more specific events of why I’m there today. He says my bloods are normal, so he’s not concerned on that side. He is aware my BP is low, yes that’s normal for me. So he decides to do a poor mans tilt test. Checking pulse and BP, laying, sitting and standing without a tilt table and without constant monitoring, just three readings. It’s not completely accurate but gives them an idea. I explained about my meeting with the Cardio Doctor a couple of weeks ago and his investigations for Addison’s, and he raised an eyebrow. Almost querying the consultants decision, I then explained the five stone weight loss and he shut up then.

He put me on two drips one to stop all the gastric problems and one to boost my fluids. Then I was left for hours and hours.

About two hours later I had to ask a nurse to disconnect me as I was desperate to go to the loo, I hadn’t been since 4:30pm it was now midnight. There were no wheelchairs, no offer for help, so I just used Andrews assistance and struggled my way to the nearest toilet which I could find. Which was a men’s loo. I didn’t care by that point! When we got back we were told a medical doctor would be coming to see me soon.

About an hour later the doctor came and took my notes explaining he would have a read through and then come for a chat. When he came back he was quite personable, I liked that about him. He asked how I was doing I replied “crap”. He asked better crap or worse crap? I said a little better crap than when I had first arrived. So explanation number nine. We went through everything again but he was ok though. He asked what I would like to do now ultimately I can’t have what I want, which is this all to go away, so I said I would like to go home and rest because it had become apparent over those six hours hospital wasn’t the place for me. He agreed being brutally honest, I had a good care plan in place, whatever had happened had occurred, I had not sustained any injuries but if anything similar occurred I was to return immediately. I was of course to bed rest for the next few days.

With that I was discharged, free to come home, it was the early hours of the morning, poor Andrew hadn’t eaten since lunchtime. He was exhausted and had been by my side throughout again, without gripe or grumble.

So as he put me back into my PJ’s and led me back to out to our car, I gave his hand an extra squeeze just so he would know, how lucky I am to have the one constant in my life ….. love x

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Bed Rest

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Making memories is fun, but the downside is the days of bed rest that follows. I’m now on day three and I’m bored to tears.

Pain levels are up a little today, the head is at a 7/10 and the hip and ankle are not settling at all, which is disappointing. So I will need to discuss with Dr M whether there is a need to continue with morphine?

Poor Andrew is beyond exhausted and even though I am too, the minute my head hits the pillow at night I can’t sleep, so I find my nights are full of thrashing around and clock watching.

I made the decision to try and “do” things today, to get myself into some kind of a routine. When I say do things I mean nothing major, just little bits, get up and showered was a good start. I even used my new shower stool, which is a major success. It is lovely to be able to shower again safely (although Andrew doesn’t leave the vicinity just in case), no syncope attacks. Even better the safer aspect of getting in and out of the bath sitting down now, no pulling my arms, almost dislocating shoulders or elbows. It’s almost blissful, what “normal” people take for granted “spoonies” really get thrilled about. Showering is something I can now get excited about again. So once I was all sorted (safe) and ready for my day Andrew headed off for work.

Andrew has wanted to sort one of his wardrobes for ages so I did this sitting on the bed today, being mindful not to sit in one position for too long so I didn’t dislocate my hip lol, it’s little things like this that I can’t do standing but I’m aware they need doing. It’s something he has wanted doing but I just know he won’t get time to do it what with trying to run a business, care for his wife, do all the shopping, cooking and cleaning, how is he meant to get time to org sir a few t shirts. So if I can help him of course I will try and repay my debt of gratitude, in anyway I can, even if it is just sorting his wardrobe out.

The downside is that pretty much exhausted me out, my spoons had run out. So unfortunately I have then had to stay in bed for the rest of the day. Even though I’m dressed I’m “resting” and bored again 😦

In the meantime I’ve heard from our District Council, obviously our MP has had a “word” and they are going to conduct a home visit to assist me to complete the necessary paperwork for our claim, that’s next week. So fingers crossed we may be getting somewhere.

That and the cold call from the company about the accident I had last year in my car, when I asked him a few more details, I really thought I could have some fun here. He said towards the tail end of last year. Oh really I replied? Very interesting I’ve been disabled since August last year and unable to drive. Oh dear was his response had I lent my phone to someone else to report an accident? Of course not I’ve been housebound!! Oh please accept our apologies we will get your number removed from our systems!! Hehe 😉 it did make me chuckle for a bit because I knew he was completely lying. At least I spoke to someone else human today lol

I’m still waiting to hear back from Wexham with regards my test, but I have a little plan for that, so will update you tomorrow 😉

Again things are still ticking along, being sick is still a full time job, I have a list of things to do and I never seem to get through that list, whether it’s because of exhaustion or brain fog, I don’t know but for now I’m back off to bed for another rest 😉

Trying to Book Tests :(

When I got home yesterday I had one thing on my to do list before I could collapse in bed and that was to arrange my Short Synacthen Test. I had called the hospital on Friday and been told that all appointments were arranged on Tuesdays so to call then. No problem.

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Being my forgetful self, Andrew had helped me set a reminder into my phone and before we left Fleet yesterday it had bleeped at me. So as soon as we got home yesterday I dragged out my file and made the call. Just as I had on Friday, I got through to the “MIDU” and was told abruptly to call 3162, well telling someone with brain fog that you might as well be speaking Swahili. What was 3162? Why couldn’t she help me, she could on Friday? I asked her to slow down. To explain to me what was 3162. She said you have come through to a ward you need extension number 3162. Oh right now that made more sense, why hadn’t she said that in the first place?

I asked if she could transfer me, of course not, I would need to start the call all over again! So she ended our call and I redialled. Back to switchboard which at Wexham takes an eternity to get answered in itself. Finally I get through and ask for the extension I have been given. It rings, and rings, and rings. I ended up bouncing back to switchboard, she apologised for the delay and put me back to the extension, I had a feeling this wasn’t going to go well today :(. Finally after several more rings the phone was answered, by would you believe it, the ward !! The same nurse who I originally spoke to in my first call, I was getting a bit frustrated now. She explained I needed the ward clerk, I said I have now been passed from pillar to post, I wasn’t feeling great so could she please help. She disappeared for two minutes and another lady took the call.

By this time I had explained my test request five times. On my final request as I discussed what my consultant had asked for and what my paperwork said. What the voice at the end of the line said next left me flabbergasted “I don’t think we have funding for the medication for that test” WHAT !! So my consultant has ordered tests that he deems necessary and there is no funding for the drugs. Now what?

She took my details, inc my number and promised to call me after speaking to my consultant.

I sat in bed thinking this is great, this man wants to rule out all these “nasties” yet my local hospital won’t fund my treatment. It really is a postcode lottery for my care!!

Within an hour she called me back to say she hadn’t spoken to my consultant but they don’t have the medication to conduct the tests, so she will have to discuss how urgent my case is. She said try not to worry and she will call me back in the next few days!

I was so pleased with the service my consultant gave me, I felt he was thorough and knowledgable but if there is no funding and backup to that service how is the continuity if care meant to be as good?

So at the moment my test isn’t booked 😦 and it won’t be for the foreseeable future as they can’t fund the medication!

Our Day Trip to France

As you all know Tanya or T as we call her, often rings with the most random of suggestions or ideas. So imagine I get this DM via twitter a couple of weeks ago. Asking what Andrew and I were doing on Bank Holiday Monday? I messaged Andrew and went straight back to T. Nothing, what were her thoughts. Did we fancy lunch in France? Hell yes!! Now this would take a lot of willpower and stamina but I’m sure it would do me the world of good?

So the wheels were in motion. The date was put on Andrews planner and once it is written on the planner that is it. There is no going back!

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So on Sunday afternoon we headed to Fleet, the idea was to have a leisurely BBQ and Andrew could chill out and have a couple of beers, something he never gets the chance to do because I can’t drive anymore and this way we would have an early night in preparation for our drive to Dover. The weather was very kind on Sunday afternoon and we managed to spend a couple of hours outside, me wrapped in a blanket, I get cold even if the sun is beating down. It’s the PoTs effects 😦

Now let me explain how this had all come about. Those lovely people at P&O Ferries had very generously offered T a free crossing so she could write up a blog post, not only the crossing, but we were being given priority boarding and lounge access once on board. Now T being her generous self likes to share so rather than just her and Bruce going alone, offered us the opportunity to tag along.

Now I have read so many people on PoTs forums say how much better they feel when they are near the coast, to breathe in a little sea air. So I was hopeful that this trip might do the trick and once I was by the sea I would feel a bit brighter in myself.

We woke bright and early, I hadn’t had a great night, that’s just PoTs and Hypermobility for you. We were soon winging our way down to Dover. Those clever people at P&O Ferries have enable ANPR so when we arrived as we pulled up the young lady instantly knew that Mrs Barrow had four occupants. Very big brother, but our priority boarding tabard was given to us with our lane number. Along with our Club Lounge tickets and we were soon in the line for boarding. What felt like ten minutes later and we were on board. It was all very organised and swift. First on and in line for first off. As I had my blue badge, they placed us next to the disabled lift. We were then off to the Lounge.

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As we got upstairs, we were one of the first to enter the Club Lounge. Having walked though the hustle and bustle of the public areas this was absolutely serene by comparison, and in my opinion well worth the cost of £14 per person. We were immediately offered a glass of Champagne on entry and then you could help yourself to as many, soft drinks, tea, coffee and snacks as you would like. There were free newspapers too, comfortable sofas and charging points around the edges of the room. However for the tweeters the wifi wasn’t co-operating on either journey so not sure what was wrong? I believe that is all good value for money.

Now you can buy extra food and we decided on the outward journey to have a breakfast as we had been on the go since 6am, I chose a Continental Basket and the others had Smoked Salmon and Scrambled Eggs. It was all delicious, freshly cooked and beautifully presented.

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Once we arrived, as we have been first one, we were first off, this priority travel was really worth it. No hold ups as you are at the front of every queue.

That was it we were in France. Our day was spent shopping for wine, cheese and bread. We ate Moules and Frites, spoke French and I laughed. At times I felt exhausted and wanted to climb in a hole but I kept reminding myself that this was one day, just one day. That tomorrow my bed could have me and PoTs could take over again. I just wanted one day to be me again, I wasn’t the “old” me, I hobbled around on both my crutches and I’ve managed to not only hurt my hip but also my ankle, but I smiled and laughed and had fun. Even if it broke me!!

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So as the day came to a close we headed back to Calais, all a little tired as we had been awake for in excess of 14 hours by that point. So we sat in the car and listened to the rain whilst giggling about how much the boot stunk of cheese. Finally we had watched lots of ferries come and go, ours arrived, and as promised we were first on 🙂

Again we got to the Lounge and were welcomed, very warmly with another glass of Champagne. We found a quiet corner and settled, we really were exhausted, we dozed a little and chatted, Andrew and T went to buy some sweets in the main shop. Maybe because we were so tired this crossing appeared to take longer, finally the announcement came to return to our cars, well we knew we were blocking the whole car deck. I had to use the lift and hobbled over.

Sadly this is the only part of my day that upset me. We got to the lift. Three women waiting, Bruce and T decide as abled bodied they would walk, Andrew stays with me, and there is another male standing behind us. The lift was busy, one of the women turns to Andrew and says well I can’t understand why a fit young man like you needs a lift. He says to her, because I am assisting my disabled wife, pointing at me. I could have cried :(. I don’t like to be labeled, the same as I don’t like to label. These three ladies, I would judge as able bodied but just on the lazy side as were 80% of the full lift that I wasn’t able to get into, that had to leave without me. What right do they have to question my husband as to why he is using a lift? By the time I got to the car I was Tachycardic, even as I type this it upsets me. Lazy people need to stop using lifts when disabled people have to use them bacause they have no choice !! Thankfully P&O that is the only gripe I have of the day and I don’t think you could have done anything about it.

Bruce met me at the lift and could tell I was upset, took me to the car, and settled me inside. Within a few minutes we were off. Welcome home.

Our day trip was over. The journey home was long and treacherous but Bruce was our hero and kept us safe 🙂

So to Bruce and T as always for being our life savers for giving us a little bit of something outside of the box, thank you, we love you both lots xx

To P&O Ferries this trip was amazing, the Priority Boarding and Club Lounge made disabled travelling so much easier for me. With my condition the less time I spend trapped in the car the better, I also find that with hyperacusis it’s nice to have quite zones and the Club Lounge really did tick this box. So I can truly recommend it as great value for money.

So anyone out there thinking of going to France, book with P&O Ferries, you can’t go far wrong!

Getting out and about a little

Since applying the first morphine patch the pain levels have started to settle, it hasn’t disappeared but I am chuffed that it is back down to the 5/10 levels which I find manageable. I would prefer zero but I know my doctor isn’t a miracle worker 😉

Now thinking back to what Dr W was saying we are in the white section of my HRT pills so I need to monitor when and if I get a “flare” and if this is when I happen to switch into the green section of my HRT then maybe just maybe this could be hormone linked. Something to monitor via the blog.

So after seeing Dr W we had prearranged an evening with friends, to go to their house, as I have previously mentioned I can’t tolerate loud venues. So to go to their house is ideal, they cooked for us, even better. I was able to eat a little food, not a massive dinner and we could chat comfortably. It was a lovely evening. I wasn’t in a rush to go home but by the end of the night after the Drs meeting and a full night with them I was really tired. Our friends picked some beautiful flowers from their garden for me too. It was a lovely gesture. They didn’t know lilies were my favourite, but as I went home Friday night I didn’t feel as isolated for a change.

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Again I still didn’t sleep too well, my hips are not good, my right hip is particularly painful. I always use my crutch and shopping for a wheelchair has become a full time job. I woke a 3:30 in agony but managed to settle until about 6:00am. I tried my best to not disturb Andrew until he needed to wake up. He had a local event that he needed to wake up for at 8am. I must have dozed off just before he needed to wake up, because he woke me!!

I then spent the morning resting again and then had a visit from my father in law, was a nice surprise. I hadn’t seen him for quite a while. Then my DD turned up and said she wanted to take up to see Andrew at the local Donkey Derby. We would be able to park nearby thanks to the blue badge, so I went along, but sadly only managed a really short visit. I saw a few people which was lovely, but after half an hour I was exhausted. DD took me straight back home and I spent the rest of the afternoon dozing on the sofa. It took me aback that my daughter was “proud” of me for trying to get out on Saturday .. I suppose I had become a bit defeatist, and it was nice to spend a little time with her.

Then last night we got another invitation from friends would we like to nip round for a bite to eat? Well with no food in the house, it would save us cooking. Again we popped round for a couple of hours until I was just too tired and in too much pain. That was what we had agreed. It was just nice to escape our four walls and see different people, new conversations and catch up on news.

So Sunday morning dawned we had both been looking forward to today, this was our lazy day. The plan was to watch the Grand Prix (Monaco) and chill out and do as little as possible and then late afternoon head down to our bestest friends Bruce and T :). Why ? Well as usual T has another mad cap plan. I shall tell you all about that tomorrow.

But for now. As far as PoTsie weekends go, pain levels are ok, morphine appears to be working, I am back onto minimal co-codamol, salt tablets appear to be helping I don’t seem to be having the dramatic blood pressure drops all the time. Tachycardia is there but it’s just a case of slow and steady. The thing I hate is my right hip …. It hurts so much 😦