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.


Pipe Dreams part two

I wanted to write about this last week but was terrified just in case I jinxed myself. You see after I typed last week’s blog post stating that the caffeine infusion had been more successful than the last one due to having the occipital nerve blocks, my head decided to do its best impression of a controlled explosion. As I wrote the last few words of the post I could feel the head pain creeping up in intensity and spent several days at the end of last week in bed. The relief the caffeine infusion gave only lasted 8 days this time, previously it had been effective for 14 days.


Even though I jinxed myself, I can’t contain my excitement any longer. On bank holiday Monday (29th August) I received a message from one of my Facebook friends, on a disability group on the same social media platform a wheelchair and power trike were up for sale. It wasn’t the same model of power trike as shown on my go fund me page but both were essentially the same thing for a vastly reduced price. I was so excited that I almost had kittens (and I’m not even a cat person). My friend Emmy told me when she found it she was beside herself jumping up and down her lounge whilst her bemused husband looked on, not having a clue as to what had caused this strange behaviour. I shared the news with my two friends Imogen and Sharon (or #TeamRach as we are collectively known) who have worked so hard to help me raise money and their response was exactly the same.


Just to make things really awkward I wasn’t a member of the group on Facebook so although I could see the post, I couldn’t comment on it to express my interest. It was frustrating as quite a few people were asking questions regarding it. These things tend to get snapped up quickly so I knew I needed to act fast. Thankfully Emmy was a member of the group and asked if the items were still for sale and if the woman could private message me. Just to add I am still waiting for my membership of this group to be approved, which as an admin of a group myself, think is pretty bloody poor.


The woman selling the wheelchair and power trike attachment did  message me, I replied promptly, with a few questions and stating the fact I wanted to buy the item from her. Now I know I am desperate to buy a power trike and wheelchair so that I can participate in the walking of my dogs off-road. I may even strike some of you as very impatient, I probably am due to the excitement of it all. You see the only thing that has kept me going since developing the CSF Leak was the thought of getting out on Woodbury Common with my dogs for the odd half hour a couple of times a week (head permitting) and for longer periods when I had received a caffeine infusion.


I have been on a roller coaster of emotions, one minute giddy with excitement, the next minute heartbroken at the thought of not getting it. When you have dreamt of this day and talked about pretty much nothing else, it takes over your life. I  have to state the lady is also disabled and battling chronic ill-health herself. To be fair to her my impatience with the whole situation probably didn’t help. Although I remained calm and polite throughout our exchanges, reminding myself what I am like at my very worst. It didn’t help though that I was excited as a kid at Christmas. I couldn’t understand in this age of the internet why this process was taking so long.


I was beginning to panic To the point yesterday where I believed that I was going to be ghosted and never hear from her again. As I was 284 miles away, I was sure she would have preferred a local sale. I had done some research and worked out the costs involved in getting the wheelchair and trike attachment couriered to me. I also had Emmey the lady that had found it for me, offering to pick it up for me as she lived within a reasonable driving distance.


I have never been very good at leaps of faith, I am not as trusting as I used to be and can be very suspicious of people I don’t know well. I guess it is from all the times I have been stabbed in the back in the past. So when she didn’t phone me yesterday, when she had told me she would my heart sank. I then started to do a bit of investigating, I had a good look at her Facebook profile, it was a genuine account. I could also see that she had been trying to sell the wheelchair and power trike attachment for a few months. So I reassured myself that this would happen, that I just needed to take a breath and not let the excitement overwhelm me


I was probably more stressed out than the average punter due to the fact we had such an awful experience when we used breed Weimaraners. People are a nightmare, we had one Sunday when we had back to back prospective buyers lined up from 10am until 4pm and only the 4pm people showed up. We had people saying that they desperately wanted a puppy, yet once they were ready to be viewed we never heard from them again. We decided to get out of the dog breeding game when I got sick. It wasn’t looking after the puppies that was the problem it was dealing with people who messed you around. We had such bad experiences the second time around that we decided once they were all sold never ever again. So I am sure that this has made me much more anxious, although I have tried to remain calm.


Finally things all fell into place and on Monday 5th September, Emmey and her husband picked up the power trike and wheelchair for me. As  Emmey promised she sent me a photograph, it was of the trike and wheelchair in the back of her car. At long last this pipe dream was becoming a reality. I still have to pinch myself to believe it is really happening. By Friday (9th September) I will be the proud owner of my very own Morris Mobile.





On Monday evening the lady that had sold me them rang me to apologise for the fact that her husband had forgotten to pass to Emmey the operating instructions. She assured me that she would get them in the post to me as soon as possible. I wasn’t particularly worried as I was sure that there would be a video on YouTube demonstrating how to attach the trike to the wheelchair. We chatted for close to an hour which was really nice as we had quite a bit in common. She had previously owned dogs so knew how strong my desire was to get out with them. She had also checked out my profile and had seen the numerous pictures of my dogs. I am hoping that the instruction manual arrives before the Trike does but if it doesn’t we will muddle through.


It has been a bit of a nightmare sorting out a courier to transport it across country. Emmey did suggest us meeting up at a halfway point but it would have meant getting a last-minute dog sitter (which can be expensive) and a painful car journey for me as hubby would have wanted me to navigate for him. The courier worked out cheaper than paying for a dog sitter and fuel for both Emmey and hubby. So now I await its arrival with bated breath.


As soon as I am able I hope to post some photos and video of us all out on the walk together.


I need to thank everyone who donated and made this possible. There are so many of you it would be impossible to thank you individually. Your generosity has truly touched me. I need to thank #TeamRach who helped and supported me when I first spoke about the power trike attachment and have held my hand ever since – Imogen & Sharon. I also need to say a massive thank you to Emmey who found the trike and wheelchair on the selling page and for collecting it. Without you I wouldn’t have it, thank you. My biggest thank you needs to go to my husband who bravely had his extremely hairy back waxed to raise money you can watch most of it on YouTube


I also need to thank Abbie who gave up her Sunday morning to wax Jamie’s back free of charge to help us raise funds.


Thank you to everyone who has helped and supported me.