stronger together

I hate writing blog posts when hubby as home as I never seem to get a minutes peace to do it and it’s even worse when he’s home poorly because all my energy is focused on him. Thankfully he seems to have turned a corner and is doing much better, managing to eat for the first time in a couple of days.


So this blog post will be a quick one so that everyone is caught up with everything that has been going on in the last 7 days.


We celebrated 16 years of marriage on Sunday, something we are both proud of having seen many of our friends marriages fall by the wayside over that 16 year period. Things haven’t been easy for us but we know that we are stronger together and can’t see any point in life without each other. Chronic illness is hard on relationships but somehow we have made it work and we are proud of that.


We marked our anniversary by going out with the dogs. It was my first trip up to Woodbury Common with the dogs since getting my power trike and new wheelchair. It almost didn’t happen when I realised halfway there that I had forgotten to bring the keys to switch the power trike on with me. Hubby turned the car around and we went back and got the keys. The next problem was the bike light. I hadn’t thought to attach it previously and now I was having to try to do it in complete darkness. We went out at 04:30am so there wasn’t even the dawn to help us. In the end I decided to just hold the bike light in my mouth as there was no way I wasn’t going to get out on the trike.


It was brilliant and the dogs took to it like ducks to water, running along beside me like they’d done it all their lives. Frankie loved being able to trot along behind me and the girls enjoyed running in between hubby and I. Due to the bike light issue there wasn’t much conversation but just having the freedom to get out and move under my own steam was enough. I was knackered afterwards and could barely move my arms for a few hours afterwards. It is amazing how good it feels to be tired because you’ve done something you wanted to do rather than just being exhausted by chronic illness.


I also managed to forget to take my mobile phone, which on the way home from Woodbury Common I was convinced I had managed to lose it their. Despite hubby telling me I had left it at the house, he should know he saw it twice having gone back in, to collect the keys. So there are no photo’s or video but I doubt they would have been any good due to the fact it was pitch black other than the light from hubby’s torch and the bike light. So despite it being a tiny bit of a disaster, forgotten keys, bike light not attached we did enjoy ourselves and it was a rare treat for me to get out of the house for something other than a medical appointment.


So far (touch wood, luckily my foot is touching the wooden coffee table whilst I type) I haven’t succumbed to the illness hubby has been suffering with, although in the last two days I have slept more than I have in months. I have gone back to bed each afternoon and gone straight to sleep. Each evening I have been asleep a little after 17:00. So I am obviously not right either. I am just lucky not to have had the projectile vomiting and diarrhoea that hubby has suffered with.


Unfortunately I had to cancel my neurology appointment that I was supposed to attend today (28th Sept) but hubby was not well enough to drive me for over an hour and I am sure that the hospital would have preferred that he would have stayed away. Ringing the appointments line to cancel though, I was made to feel that I should make an attempt to get there at all costs, even if that meant turning up with a husband who had sickness and diarrhoea. This is obviously in  direct contradiction to what all hospitals say to visitors / out patients which is  to stay away if you have S&D, due to the fact it’s highly contagious and many patients have suppressed immune systems. I was told that all the appointments for the next 6 weeks were booked and they would have to contact me when the next appointment became available. I am gutted obviously as I really needed to attend the appointment but other than grow a set of wings I had no way of getting there. I no longer hold a driving licence, so couldn’t drive and none of my family could help as they also had appointments that day. If I could have got there I would.


So now I have to wait for another appointment and just hope that they don’t attempt to discharge me for not attending. They are so oversubscribed with demand for appointments they have been using quite underhand tactics to tackle their waiting lists.
I do have some good news though, I have an appointment through for the National Ehlers Danlos Unit at the end of November. Which is much sooner than I thought it would be. I thought I would be waiting until after Christmas to get an appointment. At last something seems to have gone right.

As per usual

I know I am forever writing that things have been crazy here but the last week has been a 20 on a scale of one to ten. So stressful that it has completely drained me of all energy and sent me spiralling into a massive pain flare. I feel like I have aged twenty years in the space of a few days and only now have my adrenaline levels returned to normal. As per usual nothing has been as straightforward as it could have been.


Last Thursday’s blog post announced with much excitement that I had found a second-hand power trike attachment and wheelchair. It arrived safely on Friday morning but I am jumping ahead of myself. Thursday Jay and I were beside ourselves with excitement. Due to his shift pattern that day, we had been able to spend a couple of hours together chatting about the delivery of the wheelchair etc. We were avidly waiting to hear from Emmey to find out when it had been picked up. Jay went off to work at 9:30am without a care in the world, only for everything to come crashing down around us just ten minutes later.


The home phone rang and I was concerned when I read caller display and it said Jay mobile. I answered the phone and in one small sentence I went from giddy with excitement to despair “Baby the cars dead” he said. I asked him to explain what he meant as I couldn’t quite comprehend what he had just said. He explained that as he had driven to work there had been a loud bang, the steering had become almost impossible and every light on the dashboard had come on. He had managed to limp it into the garage next to where he works and they had told him it sounded like complete electrical failure and that it was game over for the car. The universe was playing one of its perverse games which means for every good thing that happens there has to be a bad thing.


Immediately after coming off the phone I threw up in the kitchen sink. I couldn’t even cry with frustration, all I wanted to do was be sick. I rang my mum to tell her what had just happened. She managed as always to talk me down from the ledge and give me practical solutions. As soon as I got off the phone I started googling second-hand cars and found one that just seemed too good to be true with my first search. The only problem was, it was an hour down the road where my parents lived. I rang my mum asking if it would be possible for them to go and check it out. I didn’t bother telling Jamie any of this as I knew what a state he would be in if I was ready to curl up in a ball in the corner. He was having to work knowing we had no car, no way for him to get home (other than walking or getting a taxi) and no way to get the dogs out on their walk.


My dad rang me about 45 minutes later to tell me that the car was good and he asked me what I wanted to do. I told him we didn’t have a choice and could he buy it for me. We would just have to find the money for it somehow. It was scary but isn’t being a grown up scary anyway? I was starting to feel less sick but I was stressed out to the max.


I did however have some good news in the meantime as Emmey had sent me a picture of the wheelchair being collected by the courier company. I now knew that this was becoming a reality and that it would be with us the next day. I felt so torn I was devastated about the car as it was an expense we hadn’t been expecting but I was also deliriously happy about the trike etc.


Dad rang me back with all the car details and told me as long as I had the insurance and tax in place the car could be fixed up the following day. I couldn’t believe it. In the past when we have bought cars we have always had to wait a week between paying the deposit and picking the car up. With everything online these days insurance and car tax can all be done with the click of a few keys, meaning no wait times when buying a car. This also meant that we wouldn’t be without transport for too long.


I then messaged a good friend who worked nights if he could help Jay take the dogs out the following morning at silly o’clock. He did one better and allowed us to borrow his car meaning that dog walking was no longer an issue. The babies would get a walk on Woodbury common and we wouldn’t have to face the torture of attempting to lead walk them. Something Jay would have to do on his own as I am just not well enough to do this.


I then rang Jamie to tell him the good news and that he would need to take the following day off work so that he could pick the car up. He was over the moon. I sent him the link to the car so that he could check it out. The problem was that we were both so stressed we really couldn’t take everything in. We had got to the point of overload after the previous weeks long drawn out process of buying the wheelchair and power trike attachment.


Friday morning we were both up and dressed incredibly early as we had both barely slept the night before. Jay was already stressed out about driving the new car as he doesn’t do change very well. I was stressed out about the wheelchair and trike being damaged in transit. At 9:30am I checked the couriers website to see where it was and if it was out for delivery. I was shocked to see that on three occasions it had been marked as damaged. There was no explanation as to what the actual damage was, again as had been my reaction the day before I felt sick. What the hell had they done to it whilst it had been in their care. I was beside myself, what could the damage be?


At around 10:20 am the courier arrived with the wheelchair and power trike. I told him that I wouldn’t sign for anything until I had checked everything over, explaining that on his company’s website it was stating it was damaged. It was wrapped extremely well (thank you Emmey) and there was no damage. It wasn’t until we had taken all the packaging off that the driver pipped up “ Oh it’s company policy to mark consignments as damaged if they aren’t in a cardboard box”. Even if he had told me this before hand I would have still checked everything over before signing for it. Thankfully the driver was accommodating and even helped us remove the packaging. As the courier had arrived so had my dad, to drive Jamie to the garage to pick up the new (second-hand) car. Dad was impressed with the wheelchair and the trike attachment. So was I when I finally got to check the wheelchair out, it is so much more comfortable than my previous chair and much more solid. I don’t feel like it will fall apart at any moment which is how I felt with my old one.


Dad and Jay set off for Plymouth and I had a few hours to rest before I got my hair highlighted something that had been planned about three weeks before we found out about the wheelchair and power trike. It was the first time since February that I had been well enough to get it done. Before the hairdresser came over (I can’t use a salon as I find the whole process, noise, smell and lights over stimulating causing me to collapse) I was exhausted.


Since Friday I have had three nights of insomnia and one night of proper sleep. It was only on Monday that Jay and I finally relaxed, we had been so tense and tired that we were just snapping at each other. We couldn’t even have a normal conversation without biting each other’s heads off which is very unusual for us. I think we were both exhausted and terrified at what was going to go wrong next. You see we both come from families where if something is going to go wrong it will happen to us. So we were constantly waiting for things to implode.


Sunday we had tried to sort out the power trike and let me have a little go on it but we couldn’t get it to work. So again that sent us into a panic thinking that maybe it had been damaged in transit or that we had bought a lemon. We decided to bring the battery in and give it a good charge as when I had switched the trike on no lights on the power indicator came up. The following day when we were less tired and had no other jobs that needed our immediate attention we gave it another go. We checked all the connections and found that several of the connections were loose. With those sorted the lights illuminated on the power indicator and it was all systems go.


However there was yet another problem the handle bars and the front wheel were not lining up. We think it had possibly been adjusted by the seller for ease of transportation. As Jay and I are not bike people nor terribly technically minded we were at a loss. When the handle bars were straight the front wheel was pointing at right angles to the bike. We did manage to adjust the handlebars but the front wheel wasn’t turning properly. I did manage to take it for a spin around the street but due to the fact it wasn’t turning properly and I nearly fell out on numerous occasions we didn’t take any photographs or video. Once the wheel is fixed (thanks to a friend who is popping over Sunday, we hope he will be able to sort it) it should be all systems go.


The battery is also not fully charging so I have had to buy a new battery and they don’t come cheap. This was all stuff that we were expecting and with the money raised by friends and family could afford. So despite a few first time user technical hitches we are confident we will get it up and running smoothly very soon. It’s going to take a bit of getting used to as 4 mph feels like warp speed! Also because I have never used a motorbike I am finding the hand throttle very confusing, I keep making it go faster when I want to slow down. It was hilarious as Jay was running alongside me telling me to hit the brakes. It must’ve looked like a parent with a child on their first bike! We are planning to get a dog sitter in to look after the mutts so that we can go out for a few hours so that I can get used to using the trike.


So we are both exhausted from the stress of it all. I am in the midst of a massive pain flare up with my left hip attempting to sublux (partially dislocate) at every opportunity. Things have been hectic here as per usual.