What Happens When Your Carer Gets Sick?

I kept saying to Andrew he was working too hard, pushing himself way too far, that one day his body would just shut down and I think that day has come!

As we headed to bed a couple of nights ago Andrew was grumbling of tummy pain, I won’t go into too much detail (I will spare his embarrassment) anyway after three hours of thrashing around in pain and finally waking on the third occasion to find him throwing up, I actually just said enough was enough, I ordered him to casualty. Somewhere inside myself despite exhaustion and agony I got dressed, I then helped Andrew get dressed and drove us both to Wexham Park Hospital A&E. Adrenaline does funny things to you, it appears to have made me into some kind of fearless wonder woman. I drove the car without thinking, albeit slowly, I managed to park (wonky) and we both got there in one piece! Now In hind sight, isn’t that a marvelous thing, I should have called an ambulance, but I didn’t want to waste time. I knew if I drove him I could save an hour of messing around. So that was my reasoning.

As I tried to check him in, obviously he was in a bad way, he couldn’t sit down, he was writhing around and making some very unusual almost primal noises, and I was extremely upset. A paramedic took us both straight in, he felt Andrew needed immediate treatment.

They assessed him immediately and gave him oramorph, this didn’t change a thing he was in agony. It didn’t matter what position he tried to get into he was so uncomfortable, I was helpless unable to assist the man I love and make him better. I tried to be strong and hold back the tears but it became too much and a few stray tears slid down my cheek I wouldn’t let him see them. They came over again asking how the oramorph had worked, it hadn’t, it had just made Andrew flush all hot, so they went away and came back with a concoction of three drugs for pain relief. All three were administered, two via IV, one rectally, thankfully they left Andrew to keep his dignity and do that himself

They moved us into the yellow section, we still hadn’t seen a doctor and it was getting frustrating. We had been in the hospital over two hours by this point. Andrews pain was in waves, the most serious wave came and I didn’t know how to help. This time he started to be violently sick, however on this occasion staff started to appear from everywhere, I couldn’t stop the tears, I was begging by this point for a doctor to help. Miraculously one just appeared to access Andrew within minutes.

They gave him IV morphine and calmed him down, he was fully checked over and it was decided that he probably had kidney stones which were “on the move” so he would need admitting as he was in so much pain and would need an urgent CT scan. Over the course of the next few hours the waves of pain diminished which was good, the medications appeared to be helping, suddenly they decided they had a bed, I needed to get my wheelchair as the ward was so far away. They agreed to wait for me, despite a few eye rolls.

We headed to the ward and it was suddenly a sinking feeling that my carer was sick, not just a little bit ill, but really sick. As we were put into a side ward I felt sick, shaky and not so great myself. Twice they had asked about admitting me, I kept declining. Suddenly the nurse in charge at 9:05 said I’m sorry visiting doesn’t start until 10am you will have to leave. We explained that I’d been in the hospital since 4am, she said she was sorry but rules were rules and I would have to go to the day room. Oh here we go again, my heart rate went off, my chest pain was 9/10, tears pricked my eyes, how could someone so caring be so callous?

I didn’t want to cause Andrew stress so said to him I would just go home, he said no, we would both go to the day room, after she completed the paperwork, she showed us to the room, however it was being used for a nurses handover. Guess what the rules could be broken then, I was sent back to Andrews side room! How ridiculous 😡

Andrews consultant came round and they then decided it probably was a kidney stone, the CT scan which was booked would confirm this probable diagnosis they were just waiting for space in the scanner, it was scheduled for the afternoon, imagine our surprise when they came to get us, in the morning!

A little after 3pm the top consultant came to discuss Andrews case, they had the findings of the CT scan. He agreed a very small stone was found, he stated that 80% of those size stones pass without problem. Therefore within 24-48 hours Andrew should be able to be home. He asked if we had questions, obviously my question was my care. So I asked and he immediately put the wheels in motion, within an hour we had a twice a day care plan in place, just in the short term to help Andrew and I whilst he is so poorly.

Meanwhile what do I do while my carer gets sick? God knows …. Miss him, cry a lot and spend hours and hours by his bedside, as that’s what’s i do, I don’t manage with separation. I struggle, after all look at my HR yesterday !! The hospital kept asking if I wanted booking in? Not once did they ask why I was so sick, the nature of my illness, until they had to sort out my care plan. Then when the nurse found out my HR her attitude changed.  She even queried should she give me an ECG.

It’s not fun being chronically ill, it’s even less fun being chronically ill when your carer is admitted to hospital 😢

Royal National Orthopaedic Hospital

After months of waiting I finally got the letter I was waiting for they were ready to offer me an appointment at the RNOH, also known as The Stanmore to EDSers.  Now this gave me instant butterflies, I rang them and made an appointment for mid November, Andrew and I then decided we would book another holiday, well life is too short isn’t it? So I needed to call and amend the appointment.

You are only given two opportunities to attend the Stanmore so that was my first, so when I called them to change this appointment and explain that we were actually going on holiday, they said this was my only other chance at an appointment.  I accepted this second appointment and was thrilled to find out that it was actually on the 21st October at 2.25pm.  Nearly a whole month earlier, I seem to be having some luck with cancellations at the moment!

So we are heading to North London in seven days time to see the best doctors in their field to discuss my condition.  To find out what next, what we can do for pain management, physiotherapy and prognosis, to plan for the future hopefully.

I’m hoping for positive things especially as we have the PoTs to discuss with him as well because having that as a secondary condition is extremely tough. We have seen my GI consultant via the NHS things are moving forward there, I’m not sure how fast, but it’s all positive stuff. It’s time to be proactive with regards my health however it is very difficult at times especially when I’m in a lot of pain at the moment.

So keep your fingers crossed because I’m extremely nervous about finally attending the RNOH, after all they are the experts in the Ehlers-Danlos field.

Seeing Dr Levi

After the dramas of last week and not being able to have the flexible sigmoidoscopy that had been booked for weeks, I managed to get a cancellation to see Dr Levi via the NHS for Monday morning. I was suitably impressed that an appointment that quickly had been available, after all I was really concerned about my gastrointestinal health and wanted to fast track as much of this as I could.

Since returning from Singapore my weight had dipped down to below eight stone whilst I had been really poorly, however once I had improved I had managed to put on a couple of pounds. By the time of our appointment I weighed 8 stone 2 lbs.

Over the weekend I hadn’t been feeling too good generally, either I had experienced a bit of a PoTs flare up, headache, GI issues and general ill health, most probably the tail end of the Singapore bug still kicking my behind.

The biggest problem was becoming apparent with my diet, whenever I was hungry I would try to eat, because that was what everyone wanted me to do (gain weight) but that would cause me excruciating pain. So in the long run it would be better for me to live with hunger pains than to try to eat and have the horrific pains that were happening after food.

As I headed to bed on Sunday night I was feeling a nervous trepidation about the appointment, I had forewarned Dr Levi’s private secretary that we would be along in his NHS clinic, so he might be prepared with any of my private notes if they were applicable.

We got to St Marks in good time and after a short wait, it was my turn. As always Dr Levi gave us both a very warm welcome. He is such a marvelous consultant. He ran through the results of recent tests that I had undergone, the gastroscopy including biopsies were all normal. He also told me the Short Synacthen Test result had come back normal, so I didn’t need to worry any longer, which I thought was very kind of him.

We discussed my weightloss, he is very concerned, as much as I am, he has set me a goal weight gain to a total weight of 55kgs. He prescribed me some medication to supplement my diet to add calories, if I’m not feeling well it can be instead of my meal, but if I’m feeling well it can be as well as a meal. Once I’ve achieved that goal, the next goal will be 60kgs. I like the idea of little steps, nothing too big, or too daunting at this stage.

I asked him about being referred to a dietician and he agreed instantly, saying that would be a great idea. I was astounded there was nothing he didn’t disagree with me on. I explained that I was concerned that I felt if I didn’t get help I would end up down the tube feeding route, and I wanted to avoid that. He agreed he would do his best to help me avoid that, he really understood my concerns.

He wanted me put down for a flexible sigmoidoscopy on the NHS immediately, he took my mobile number so they could book it straight away. As previously discussed his concerns were my EDS issues and the best care I need to receive during the procedure.

As we walked away from the appointment both Andrew and I were relieved that we had got the appointment so quickly with Dr Levi, he’s fantastic and really puts us both at ease.

So now it’s just a case of waiting until we get the call from the hospital, booking the procedure, hopefully it won’t be too long.

Pendant Alarm

The final installation from the occupational therapist took place last week, my pendant alarm has been fitted.  So I am all safe and secure in my own home now. The engineer arrived when I was at my sickest, I had a raging temperature and was coughing really badly, the poor chap really didn’t want to be in the house and couldn’t fit the items quick enough.  

Thankfully it only had to be fitted to the phone line and a plug socket, all nice and easy.  Then a quick test call to the call centre and it was done.  He needed to explain the pendant to me it hangs round my neck or I can keep it round my wrist, if I fall or faint I press the red button and it calls the centre to find out what type of help I need.  They in turn call an ambulance, the Red Cross or Andrew if I just need his assistance its perfect.

The engineer also bought a pager system, its a little simple buzzer to save me having to shout downstairs, we had a perfect example in the last week, Andrew was watching TV and he couldn’t hear me over the sound and I just couldn’t make myself heard, with this little buzzer I just don’t need to shout.  One press and it will let him know I need him, nice and simple.

The only other thing which was added was the key safe near the front door, so should an emergency occur after I have pressed the pendant alarm, the doctor, ambulance or whoever needs to gain entry to the house can.  He fitted that within five minutes and gave me the key code.  

So thats it we are nearly all done with the OT systems now, I have some paperwork to complete, a hire agreement for having it in the house.

It’s a reassurance thing now, I do feel safer here when I am alone, especially when I am feeling under the weather. So thank you Bucks County Council for the support, it’s amazing how reassuring it is to feel that little bit safer in my own home again.

Let Down

I will try not to let this post get too “ranty” after all I could get really carried away it’s taken me days to calm down. For the tears to subside, the anger to mellow, that hasn’t gone away completely but I don’t think it ever will after all how could they? Let me explain!

As you know I’ve been covered by Simplyhealth whilst I was working at my previous company. Now when they let me go, sacked me, terminated my contract, however you would like to put it, for being unfit to work, I was under the impression that my healthcare policy was valid until the end of the year. I had a valid certificate saying so and nothing in writing telling me otherwise.

I made my GI claim and everything was going well with Dr Levi. The investigations were sadly going slower than I would have liked and when he said he wanted to do a Flexible Sigmoidoscopy the day we were due to fly, I was of course disappointed, it was pushed back until our return. I called Simplyhealth on 18th September and they were brilliant and authorized the procedure. As far as they were concerned I was covered the policy was valid, of course it was I was holding a valid certificate.

Whilst I was away my employers broker got in touch with Simplyhealth and requested I was removed from the policy from the 23rd July. Thankfully they refused saying they couldn’t backdate that far, but they would backdate 30 days and cancelled me from 23rd August. So as of the 23rd August I was no longer insured. My kind caring ex employer who was so worried about my health left me high and dry. My final test would be left undone, I wouldn’t get the answers to all the tests I had, had completed to date.

How did I find out, the hospital called me on Monday morning, the day before my operation, to say that they had received a call to say my insurance had been cancelled and how would the procedure be funded? Of course I was thrown into a tailspin and had to spend the whole day trying to find out what the hell was going on. Who had called the hospital, it appears it was either the broker or my employer. It was definitely not Simplyhealth, and how could Simplyhealth revoke an authorization number that they have issued, when their member services have decided to backdate a cancellation. Surely this is just bad business?

There is a tiny bit of good news I have a NHS appointment with Dr Levi in November, so I decided to call the appointments line and ask about a cancellation, after all I think I’d had all my bad luck. Guess what low and behold I’m seeing him next week, so I’ve dropped his private secretary an email so he might bring my notes along and we can go from there.

Of course I’m disappointed and angry, I thought better of my former employer. I walked away too easily, will I do anything, no, it’s not my style, I can’t be bothered with the grief, I’ve got too many health battles without taking on legal battles. To anyone out there reading this facing dismissal because of your health, fight for your rights, get everything in writing, I didn’t, I trusted them and look where it got me!

One Week On

So we left Singapore a week ago and my whole week has been spent laid up in bed. After my doctors visit I thought it would be a miracle 48 hour dose of antibiotics and I would feel right as rain. How wrong I was!!

By day four I still had a temperature in the 100’s, I had lost 7lbs in weight and couldn’t get out of bed. In fact by Saturday in total I had lost over 9lbs!!

I began to wonder what I should do? I just struggled on with the tablets. My nights were filled with weird dreams, almost hallucinations, so I was sleeping which is unusual in itself, although it was broken with lots of coughing. My days were long and lonely, scattered with naps and medication breaks.

I made the decision on Friday that I wanted to try and get out of bed and get a wash and changed. That was like running a marathon, it took me about half an hour to achieve, but I did it. Then went back to bed, all clean and tidy.

Over the weekend I hit rock bottom again, I think the loneliness is hitting hard, having been with Andrew for two weeks, to have him back at work full and I mean very full time, so he has no time to pop back and “care” for me is hard. But that’s the nature of being self employed, you have to run your business and be there when your customers want you.

I’ve had to isolate myself so I don’t infect others as well, friends and family don’t want this bug. So that’s been hard too 😢

So one week on I’m hoping I might start to improve, if not I will be heading back to the GP this week and finding out what next, because I can’t cope with another week like this. It’s been horrible so far.

The surprising thing is out of the whole group 5 out of the 7 have fallen ill. I’ve been hit worst, probably the EDS/PoTs effect but must be something to do with Singapore? I emailed my son in Australia and he also got sick when he got back from Singapore so there must be a bug, or some weird coincidence, that we all end up ill when we leave!

Silent Sunday – 5th October

Inevitability

I felt poorly before I’d even left Singapore, so what was I honestly expecting? We landed at a little after 6am on Monday morning at the new Terminal Two at Heathrow Airport and I was just keeping going. The plan was for Andrew to take the day off, so we could unpack and rest.

As we had flown through the night, losing the time difference and a lot of sleep, we headed to bed for a few hours as well. Our plan worked, we appeared of managed through the day and by 10pm we were ready for bed properly. However I was ill, really poorly, my chest was tight, my throat burning, my head pain 10/10, this didn’t bode well.

I fell asleep quickly but by 3am was awake because I felt like I was drowning, I couldn’t breathe, I was panicked and woke Andrew. He had to hit me on the back to get me breathing again. That’s how the rest of the night went poor Andrew he was so patient, but obviously worried.

When we finally woke at 9am, a call to the Doctors was made, it was obvious I was going to need to be seen urgently. So at midday today along we went. After explaining where we had been, about the bites from the mosquitoes, my sore throat, chest problems overnight, along with my ongoing health problems, the locum doctor, after a very thorough check up, decided that I definitely had a throat and chest infection and possibly Dengue Fever but that was something I would need to keep an eye on over the next week or so. If I felt no better I would have to go back.

He issued a prescription for super strong antibiotics and sent me on my way. With strict instructions of bed rest with increased fluids and pain relief!

So it was inevitable really after two weeks of rushing around my body has just shut down and said “enough”

I’ve not felt this poorly for a long time, really sorry for myself stuff, laying in bed with a temperature of 101 degrees and horrific pain is not my idea of fun 😔 but was it worth it? Hell yes! Singapore you broke me but I loved you x

PS After 48 hours I’ve just tolerated a small bowl of soup, I’ve had to force it on myself, as when I weighed myself this morning I had lost 5lb since I had got home on Monday! I feel no better, whenever I move the head pain is searing right through me! I’m not sure what’s worse the earache, sore throat or cough 😔. So it’s just a case do keeping fluids up and lots of bed rest, following the doctors orders.

F1 and Friendships

When we booked to come away I was adamant I wanted a holiday. Some Andrew and I time, it is so very important to us, we get so little. When we booked with another person I was a little put off, but hubby assured me we would get some “us” time.

Then we arrived and two became three became five, became seven, this was never part of the plan, but that’s the best bit. Who cares! I met Steve and Antonela for about one minute at the Autosport show in January before I fainted and needed to take a seat, so barely knew them. Rob and Helen I didn’t know at all, I didn’t been follow them on twitter, that was soon rectified. Andy (Booti) was the only one I knew. How did we all get to know one another Social Media, now you tell people that and they think we are bonkers, but it really is how it’s happened. Without Twitter none of us would know one another.

So the Singapore trip was arranged and paid for, we’ve flown out, the first day we’ve turned up at the IWC watch event to meet Lewis and Nico and we’ve become inseparable.

They have become my Singapore Buddies, without them I wouldn’t have enjoyed this experience half as much.

Rob has taught Andrew so much about photography and shared that knowledge, it’s a great help. Helen, her wicked fun sense of humour, Hawkeye Helen, who could spot a F1 driver past or present from half a mile, and go dashing off, with my wheelchair panel. Apart from when she saw Valterri and had me chasing behind her! Antonela who has so much technical knowledge on everything F1 she puts me to shame, I’m new to the sport so have no idea! Steve who pushed me 3/4 of the way round Singapore my knight in shining armour, thank you. Booti, well what can I say, just thank you for being you, for quietly checking on me when you knew I wasn’t well. Giving me water, tablets, a squeeze on the shoulder, you are a true friend, I’ve loved having you along for the ride.

Finally Mr Webb, my husband, who made this trip possible for me, remember I no longer work, so he has to pay twice now. Thank you for bringing me to the other side of the world. For letting me see my first ever F1 race I absolutely loved it, meeting that many drivers was so cool :). Finally reconciling with Christopher has to be the highlight of the holiday for me, so if there is one thing I’m taking home with me, it’s a much fuller heart, One which includes my very grown up son and his gorgeous girlfriend. Thank you seems so trivial but it’s all I have for you. I love you x

So F1 and Friendships go hand in hand, thank you twitter you are awesome.