Our Weekend

As last week drew to a close I felt physically and emotionally drained. I knew it was more than just the ups and downs of dealing with chronic illness and on Saturday something hit, and it hit me really hard. I realised what it was my mortality, now my family may wish to stop reading at this point.

I’ve had my headache for 946 days, it’s been 8 months since I was diagnosed with PoTs and just over a month since I was told I formally had Hypermobility syndrome. I was getting dressed and looked in the mirror and realised for the first time I now really looked sick, I’ve lost 80lbs in total, that’s 40% of my original body weight!! That frightened me, now with a gastroscopy planned in the next 24 hours that is so urgent they are scaring me and being totally unable to tolerate solid food, I just became aware that I need fixing and fast or I’m going to die. It made me cry. I don’t want a camera down my throat, I can’t get food down there so how can they get a camera? I’m terrified but I have to go through with it, so they can mend me.

So I woke on Saturday crying just quietly at 5am so I wouldn’t wake Andrew and laid there thinking about all the thinking I really should do. I really should get everything straight and in order “just in case”. Then my mind went into overdrive we don’t have wills written so that was next on my to do list. So as the birds were waking and Andrew was sleeping I was thinking about my mortality and how it’s time to get my life in order, say my sorry’s, fix my mistakes and stick my two fingers up and those that really don’t matter, because this illness has taught me there are plenty of those out there!!

Once the day got going I told Andrew I didn’t want to be on my own, he was ok with that, so I sat with him all day once his day was done we headed off for an evening together. We got in the car and during the journey a song came on the radio by John Legend called All of Me. I always listen to the lyrics of a song and these struck a chord, for now this will be a bit of an “our” tune and as we trundled up the motorway tears rolled down my cheeks. I was an emotional wreck but I couldn’t explain to Andrew why (if you read this baby sorry x). We got to our destination and enjoyed a couple of hours, again together, I was in a wheelchair and the whole time Andrew was worrying whether I was warm enough, did I need drink, food etc. Really just being my carer rather than my partner, how times have changed! Then the time came I was too cold and we had to go, we said our goodbyes and left. It had been a lovely but tiring evening.

Our Sunday had been planned for a few weeks DD bought Andrew tickets to see Katherine Jenkins at Stoke Park. So our plan was for me to rest all day so I would be well enough to enjoy the concert. The day went well I really didn’t do anything a lot of bed rest whilst Andrew fussed around me. Eventually the time came to head off we arrived at Stoke Park at 5pm and went and sat in the gardens enjoying the sun. Andrew had a beer and pizza, I’d pre-packed my complan still unable to tolerate solids ūüėČ As the concert started the sun was setting behind the stage it was the most glorious setting. Andrew tucked me under blankets and coats in my chair to keep me warm, not wanting me to catch a chill. I was mesmerised by her singing and gripping Andrews hand never wanting to let go, I wasn’t feeling very well, but nothing was making me leave this magical show. As the night drew to an end I was really grateful that DD had bought such a thoughtful gift for Fathers Day, so that I could spend quality time with Andrew. She knows how much it means at the moment, so thank you Katie xx she picked us up from the venue and I was soon warming back up in the car.

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As I went to bed last night I thought I know it may be nothing, I may be totally jumping the gun, but even if I am a bit of lifestyle housekeeping might do me some good. So this week will involve some letter writing, a lot of phone calls and getting my house in order but most of all it will be spending quality time with the people I love the most and telling them just how much I love them x

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Holiday Season

With everybody getting excited about their upcoming holidays and my inbox seemingly always being filled with offers on a daily basis from one holiday company or another, I’m going to find this a very long summer! I look wistfully as websites planning holidays to far flung destinations that one day I know we will take. One website I stumbled across this week was Fred Olsen Cruise Lines and their last minute cruise deals.

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The last time I went on a cruise I was 9 years old, it was the QE2 and 1977. I dread to think how much my parents paid. So imagine my surprise to see that prices nowadays start from as little as ¬£472 per person for a last minute deal to cruise the French Waterways. How relaxing would that be? I’m just thinking of an escape at the moment somewhere we can switch off our phones, put our feet up and let someone else look after us.

That is that cruising is all about. We have some friends who have recently tried it out and absolutely love cruises, they explained it to us as going away on your own little floating city with shops, entertainment and fitness facilities. How cool is that?

So maybe when the wistful dreams can turn to reality and we have saved up some of Andrews hard earned pennies we can go and enjoy a well earned rest!!

No Flares

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I’ve looked back over the last few weeks of my blog and realised that I haven’t had a PoTs / Migraine flare for over a month now. This is fantastic news so it means it can’t be hormone linked as I had first suspected. Now let’s not all get excited and say yay she’s cured, that’s not what I am saying, what I’m saying is the medication I’m currently on appears to have levelled out most of my NPDH symptoms. So that crushing unbearable headache that started all this off, that used to flare up every month seems to have settled to a bearable 4/10 on the pain scale, it doesn’t mean it doesn’t occasionally fluctuate a little but again this I can manage as well with rest.

While most of you wouldn’t like a 4/10 on the pain scale, I will quite happily live with it!! It’s so much easier to cope with that the unbearable, unspeakable 9/10 that I was trying to survive with.

Sadly the other problems aren’t settling down, so the eating is deteriorating rapidly, solid food is really unbearable and my weight is down to a dangerously low level, but I have a gastroscopy on Tuesday to look forward to hopefully to find out what’s going on in there. The bones, nerves and muscles are all playing up in their own way and it’s now in various joints. Both my hips hurt every day, some days my shoulders are playing up, my elbows also like to join in from time to time. It’s almost like no bone wants to miss out on the pain party!! Some days I just get so down from no longer being “normal” I would love to just get up and get on with it, but can’t and it frustrates me, enormously.

I’m trying to take the positives to keep spirits up, after 11 months the balance of medications might be just about right for the headache, I’m just about to get my mobility back so it’s not all doom and gloom but I have got to write the hardest email I’ve had to for a very long time. I will explain all when it’s all done ūüė¶

Until then thanks for being my sounding board, I don’t know what I would do without you all xx

CT Angiogram

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Well this has been a long time coming, Dr Rex ordered this way back in February, but after loads of feeble excuses it just sort of got forgotten.  Anyway when I made my complaint to the Hospital Trust this was item number one.  How could a Cardiology Consultant request one as necessary and then it just be forgotten?  Surely there is a duty of care for it to be done?  Low and behold it was swiftly booked and yesterday item number one on the complaint letter was ticked off.

Andrew was working really late the night before, far from ideal, but I doubt it would have mattered, I tend not to sleep well, the night before a procedure.  I worry, I always will, even for the most minor thing.  The appointment was arranged for 8am, which I have never heard of before and we were asked to be there 15 minutes before the appointment to complete all the paperwork, pretty much a repeat of the chest and abdo.

The journey to the hospital was simple, it was too early for traffic, parking again not an issue, I was feeling a little out of sorts but we bumped into a friend and she walked us to radiology, trying to keep my spirits up. ¬†It was like a ghost town, it turns out nobody arrives until 8am so they weren’t prepared for us. ¬†On the dot of eight the receptionist got to her desk and I was sent around to the CT waiting area, my friend went back to work and we were left alone. ¬†The nurse quickly asked me to change and also gave me the usual paperwork to fill out. ¬†Within five minutes I was in the scanning room but I needed my mobile phone for my medication list, so quickly went back to Andrew to grab that ūüôā

By the time the doctor arrive I was laying on the bed with all the ECG electrode attached, the canula inserted and my mobile in my lap. ¬†The doctor looked really confused, I explained straight away that he wanted my medication list and I couldn’t remember them all, and he seemed super impressed that I had an app for them. ¬†He noted that I was on Ivabradine but even though I was laying down at the time my resting heart rate was 95 BPM!! ¬†Which is unusually high, yes I was a little tense but it shouldn’t be that high. ¬†It wasn’t settling at all. ¬†He indicated that the Ivabradine appeared to be not¬†working for me. ¬†So he told me what would happen ¬†they need my heart as still as possible and to do this they needed to slow it down to approximately 60 BPM’s to do this beta blockers would be injected. ¬†So he got cracking ¬†I don’t know how many vials he got through but we were there a good 15 minutes, I was in the high 70’s heading in the right direction. ¬†Then he made me laugh and it popped back up into the 80’s ¬†This was really tricky, so we tried to keep focused and calm, I kept breathing deeply. ¬†Soon it was time to start the scan I was down to 65 BPM’s, another explanation about the contrast this time they were using double amounts, so the warm flushing sensation would feel worse than before (and it did)
He then got ready to spray GTN under my tongue and I stopped him, he asked why, querying if I was concerned for the headache side effect. I explained that during my TTT when it had been administered my HR had spiked at nearly 200 BPM due to the PoTs so considering he had just worked so hard to get it so low it might not be a good idea to put me into cardiac arrest! He agreed instantly, stating the crash team were too far away so he would rather that not happen, he was grateful for the PoTs reminder! Then they left me.

The machine jumped into life, it whirred and started speaking to me, breathe in, hold your breath. ¬†The instructions were clear and concise. ¬†Within ten minutes it was all over, both sets of scans were over and I was done. ¬†The nurse came back in and sat me up, my hips didn’t like it and neither did my head, I was very dizzy and the pain was pretty horrific despite the morphine patch attached to my shoulder blade. ¬†The doctor came back in to check on me then and insisted I sit very still and got me water. ¬†After five minutes the nurse helped me back to the changing room, where Andrew helped me get back into my clothes, but the staff left the canula in “just in case” ¬†In case of what?? ¬†I was beginning to panic, I was really not feeling too good, the beta blockers had slowed my heart rate quite considerably and I think my blood pressure was in my boots too.

They asked us to wait and went off to look at the images and insisted I keep drinking, the doctor kept coming to check my pulse, mentioning I was hypotensive. ¬†I still didn’t ¬†feel too well. ¬†So I was downing several cups of water as I wanted to leave nothing was keeping me in the hospital. ¬†I was still there over twenty minutes later, the doctor finally came back and gave us the news that there was no coronary damage, which was good. ¬†So he would now do a more detailed report on the heart itself for Dr Rex and Dr Mayadunne but as I seemed to have stabilised I could now go home. ¬†I was relieved, that was todays adventure, and all that before 10am.

I will say today Wexham got it right, it is a shame that it took a complaint to get it that way and it appears they opened especially for me, but I am really grateful for that special treatment.  Just once in a while it is nice to be treated like a princess!

Funding

Two ex colleagues recently suggested the Thames Valley Police Special Constabulary Welfare Fund, this is a charity that helps people like me that it times of financial hardship or distress need assistance.

I didn’t think they could help, but was assured they could. So on Friday last week I submitted the form, all the necessary supporting evidence and a letter to explain why I was submitting this claim.

Last night when we got back from the wheelchair fitting my old Special Chief Inspector let me know that there was a conference call happening and she would let me know the outcome shortly. It was a nail biting hour or so, I was really nervous and yes tachycardic, symptoms always rear their ugly head when adrenalin is coursing through my veins.

Around quarter to nine last night my mobile rang and it was my SCI, it’s hard not to see her as that ūüôā even though she is more of a friend now! I nervously answered the phone and was greeted with the amazing news that following a unanimous decision. The Welfare Fund were willing to pay in full for my wheelchair.

Yes, you read that right, in FULL !!

As you can imagine what followed was a very emotional call, a lot of tears and thank yous. I never expected anything but I am so very grateful to every member of that committee for taking the time to listen to my story and realising that a wheelchair will change my life!!

And it will, change my life that is, plans are already in place for what I can do when I get my chair ūüôā I am so looking forward to getting out of the house.

So to the Special Constabulary Welfare Fund, thank you for this, you don’t know what it means to me xx

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Down the Legal Road?

I’ve been in touch with the hospital again and the complaint doesn’t seem to be going anywhere fast. ¬†I discussed with my personal complaint handler on Friday what next and she was giving her team a 24 hour window before it was being escalated. ¬†Funnily enough I haven’t heard from her since, but did I expect to, no not really. ¬†My expectations of the hospital really are that low! ¬†So what next for me? ¬†What should I do? ¬†Every time that hospital have let me down I have let it go, so why should I this time?

The list so far are ….. Three failed sterilisations procedures, leading to a full hysterectomy at the age of 28, goodness knows how many misdiagnosis’s we now know to be Ehlers-Danlos Syndrome but have been fobbed off as mental health, gastric problems and other non plussed problems. ¬†It really is a catalogue of disasters, but most of these date back over five plus years, let alone the complaint letter with three items on it, albeit one item will be resolved this week!

Little people like me have no one to turn to.  No one to advise us.  This is where maybe just maybe it is time to get some legal advice.  It is something I have been dreading but maybe if we held the Trusts accountable they would start behaving themselves!

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This is where Redress Law may come in useful. They offer free no obligation case assessment. All you need to do is give them a quick call on 0845 287 4740 and speak to one of their team.

Maybe it is time for me to give them a call!

 

 

This is a collaborative post

What a Difference a Day Makes

After feeling so down about the wheelchair purchase I decided to make contact with the Aylesbury company, Gerald Simonds, I was put through to one of the sales team and we agreed a time to pop up. It’s a 45 minute journey and he checked that there was a good selection of chairs in the showroom for us to see.

Andrew got home by 2pm and we headed off it was a lovely afternoon and the roads were nice and clear. We arrived with time to spare and once we got there it was clear to see they had plenty of stock to choose from. Folding and rigid chairs were on display, this was what we needed to see. Nesad who I had spoken to earlier that morning introduced himself and was soon running through all the folding options. I soon realized I didn’t want this type of chair, and this was what we had been quoted for. We moved towards the Rigid chairs which funnily enough I had seen for the first time on Sunday in Windsor. I liked it, I sat in one and it was just right, it was a Ti Lite. At that point Nesad needed to attend to a young man who was collecting his brand new super duper powered chair, this young man was about six years of age and amazingly excited. Nearly as excited as me !! So with his apologies, he said just try all the chairs and left us for about 45 minutes.

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Perfect, I sat in several, moved about the showroom, wheeled into tight spaces and sat still for all that time without any pain in my hips and no fainting. I was out of the house and not symptomatic :). Young man sorted and Nesad was back with us, we explained that I loved the Ti Lite ZRA wheelchair. Then the serious business of measuring and choosing options and colours. There was no pressure to upsell, we had mentioned our budget. So we kept as tight to it as we could. Finally the figures were in and amazingly this chair was just over the original budget of the Quickie chair, but was a much better chair.

He then looked at me and said what would make you happy? I didn’t understand, he asked if I would like the specialist frame shape that was on the chair I was sitting in, I said it was lovely, but at another couple of hundred pounds out of the question. He said if it makes you happy it’s yours. I was exstatic, I looked at Andrew and he just knew this was where we would be doing the deal!! We hadn’t added a cushion but again we weren’t to worry about that, it would be “sorted out”.

This was what I had been looking for when I was looking for good customer service. All paperwork completed, the agreement was CAD drawings were to be drawn up for my chair, it would take approximately three weeks to build and ship and in the meantime they would try and lend me a chair to get me some kind of mobility.

As we headed home we knew we had made the right decision by choosing a new supplier for this purchase now to await the funding decision. Keep your fingers crossed xx

Juice On !!

For the first time ever last night I went to bed without any type of gastric pain, no griping and I have woken this morning feeling just as good in the stomach department.

Yesterday I didn’t have a solid meal, that is a first for me and I’m not sure where we go from here but if this is how juicing makes me feel gastric wise it’s a 100% improvement.

For lunch I had my Complan shake as usual, which Andrew makes for me with soy instead of dairy, as I have no lactose. Then last night I made a juice of Beetroot, cucumber and apple, I found it absolutely delicious, the red colour is slightly off putting but I’m not worried about that :). It was really filling too.

By 10pm I even said to Andrew I didn’t feel gripey as I would have if I had eaten a normal meal which made such a nice change.

It’s lovely just to eliminate one symptom out of the long list of problems, so whilst I was sitting there and my hips and shoulders were hurting at least my stomach wasn’t playing up!!

Maybe juicing and a liquid diet is the way for me to go for now, until I can get a dietician to discuss what next. It is getting lots of nutrients into my system, at least three or four of my five a day ūüėČ

I may try solid food and then a liquid food diet and compare how I feel over the next day or two and take these findings to my consultant. But for now Juice On !!

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Being an Unhappy Customer :(

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This is a subject this is always close to my heart, having run a successful retail business for over fifteen years I know how it works. You HAVE to be nice to customers, now as a customer I like shops and suppliers to be nice to me. So why do I feel I end up like I always end up being nice to them and I’m not the “happy” customer I should be. ¬†I am a firm believer in telling retailers when they get it right, not so long ago I left a store and tweeted that the Pets at Home, Slough shop should be proud to have Debbie behind the counter, they came back to me with a message of thanks for telling them this. ¬†She just made my day, good customer service matters! So when you get bad customer service it really does have such a detrimental affect.

This whole wheelchair situation is getting me down and it really has nothing to do with the money, let’s put that to one side for now.

I have been in discussion with the distributor of Quickie Wheelchairs in the UK for a number of weeks now and it has come to nothing sadly, it came about following a cheeky tweet in which I asked if any medical supplies companies wanted to work with me. ¬†A couple of weeks later I got an email out of the blue, I bounced a few emails offering my services, for example writing blog posts/reviewing wheelchairs or even acting as an ambassador for their products but disappointingly for me that was pretty much it, I haven’t had any success. ¬†The marketing department are still “considering their options” meanwhile I am thinking of spending thousands of pounds on one of their products. ¬†Why I hear you ask? ¬†Yes I am actually asking myself the very same question. ¬†I will tell you why, because it is a very small market the sports/cool wheelchair market, there are only three real manufacturers that I can find and Quickie is one. ¬†So I am stuck. ¬†I spend my money with Quickie or I don’t have a “cool” chair.

The next problem is the actual purchase of the item. As you all know Simplyhealth have been amazing getting me my diagnosis, and when it comes to hiring our equipment the Burnham store is our first stop shop. ¬†However our area mobility representative whilst being a lovely chap, leaves a lot to be desired. ¬†He turned up late on the first Friday meeting with not one chair to show us. ¬†He didn’t listen to any of our requirements budget wise, only bought two chairs to show me on the second meeting. ¬†Following that meeting I had a couple of questions and knowing he was on the road I fired off an email which it then took four days for him to respond to. ¬†This had also required me to call his head office chasing him up asking if they could get a quicker response as I was needing final figures so I could go back to the Welfare Fund who were looking to help support the purchase of my chair. It was all just so disappointing too many promises being broken and a customer being let down before an agreement had even been reached. I mean he had insisted he would “look after us” price wise and really hasn’t when you look at the costings. ¬†Even the replied email doesn’t make any sense to the questions I actually asked, so sadly Simplyhealth on this occasion I just am not a happy customer, or willing to part with in excess of two thousand pounds, be it my money, or that of my friends or colleagues who are willing to fund a very expensive wheelchair on my behalf!

Now what? I am back on the internet trying to find another supplier, we appear to have one in Aylesbury, who I have already reached out to via social media and we are hoping to pop along to this week. Although having looked on their website they also do other manufacturers called RGK and Ti so maybe I will be swayed away from Quickie, we will see.  I will go on their recommendations and advice.

It’s about the whole package, not just the measuring up, I want to know will they lend me a chair whilst mine is being built, what if mine breaks who helps me? ¬†After all this is the most expensive personal purchase of my life what back up do I get, I am not willing to part with a huge lump of money to a company who can not get back to me for four days via email. ¬†That doesn’t bode well when my wheels literally fall off. ¬†So over they course of the next week I plan to try and find a company who would like me to spend my money with them!

I want to leave a happy customer, knowing this is my fresh start!