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.

This PAIN that you hold is yours

“This PAIN that you hold is yours. There is not a single PAIN quite like it. Nobody else on God's green earth can feel this PAIN, or have the indescribable feeling of pride you will have when you overcome it. This PAIN is not your curse ; This PAIN is your PRIVILEGE” Arnold Schwarzenegger

It's funny that since getting chronically sick nothing can quite set me off on an epic rant than a stupid inspirational Facebook quote. I probably sound like Mr Angry and I can assure you I am not. I did have a quick temper when I was younger but I have mellowed considerably with age (as I think we all do). I also don’t sit looking at things on social media to find things that annoy me. Of course I could be accused of taking the quote out of context, when Arnie said these words he was referring to the pain felt when you have given your muscles a bloody good workout.

However what do you do when it is posted out of context, no quote attribution, just a meme posted on someone's feed? Without looking it up on the almighty Google to find the author, how are you supposed to take it? Does the poster mean all pain is good? Because I know many of you like me would beg to differ and that’s the problem when these things are displayed without context. What is inspirational to some could be considered condescending / patronising / thoughtless (please delete as applicable) to others.

I didn’t turn into the Facebook police on seeing this and tear the poster a new arsehole. Which if I am honest, depending on the day I may have done. I am in a zen like phase at the moment probably through pain, insomnia and exhaustion where I am not going with a gut reaction because I know I am probably not thinking rationally. On a bad day I may have at the very least asked the poster to explain the logic behind the post or I may have gone nuclear and not very politely asked “What the f*ck do you mean?”

The quote “No pain, No gain” can also set me off. When Jane Fonda said this she was of course talking about exercise. However this is another quote that gets misused and gets attached to all sorts of endeavours. When I was well I probably bandied around this quote as well. It isn’t until your world changes by some event be it sickness, bereavement, redundancy that a well-meaning inspirational quote can suddenly impact you in a completely different way. It can seem despite the numerous followers or friends that the poster has, that this meme has been specifically aimed at you.

I am not for censorship in any form before I get accused as such I just want to offer a perspective from the other side. A while ago I completely lost my shit with a meme that was posted by one of my friends it said

“Good things come to those who go out and fucking earn it”.

An obvious swipe at those who claim benefits but what if through circumstance you have no choice and have to claim them? Should you be made to feel ashamed that you have been made redundant / become too sick to work / became a single parent  through no fault of your own? Such is the culture in this country to blame those who have to claim benefits for not trying hard enough to change the situation you find yourself in. I love it when you challenge people on a post like that and they respond “I didn’t mean you, I meant the scroungers”. What they fail to realise is there are many people like me, in fact we outnumber the so-called scroungers but a post like that tar’s us all with the same brush.

As for the quote that inspired this blog post, you may be surprised that I agree with some of it. It is true that “This PAIN that you hold is yours.”  Pain is subjective, no two people’s pain is the same, it can’t be shared, it is your burden alone to carry. Where Arnie is suggesting the pain from a good workout, where you have pushed yourself to extremes, I am simply referring to the pain of everyday existence. I would love to feel the pain from a good workout however I won’t deliberately increase my level of pain for a short-lived endorphin rush, only for the pain inflicted to last a week rather than the one or two days from exercise.

He is also right when he says “There is not a single PAIN quite like it.” It wasn’t until I started to learn about EDS (Ehlers Danlos Syndrome for the uninitiated) that I discovered that feeling pain every hour, everyday for as long as you can remember wasn’t normal. It completely blew my mind that other people, (non EDSer’s) didn’t live with constant pain. I had been convinced from an early age that I was a moaner and complained about pain unnecessarily. That I was weak and that everyone else bore their pain uncomplainingly. To suddenly find out that I wasn’t weak, that I had been dealing with off the chart back pain for years with little more than paracetamol made me feel vindicated. It wasn’t in my head, it was real. There is no pain quite like the EDS pain I get in my joints, in my abdomen or anywhere else in my body. My pain is different even to other to other people with EDS as we all experience pain in different ways. In some ways we are like snowflakes, no one of us experiences pain the same way.

”Nobody else on God's green earth can feel this PAIN…” again despite my rampant atheism, I agree with this statement. As I explained in the paragraph above, everyone experiences pain differently. Everyone has a different pain threshold. I am good or should I say I have a high pain threshold everywhere except my mouth. I seem to feel more pain at the dentist than I do with any other medical procedures performed elsewhere on my body. Due to the fact local anesthetics don’t work on me properly, they either don’t work well enough or I burn through them very quickly, it means the dentist surgery is a very painful and frightening place for me. Even the dentist just cleaning my teeth with cold air and water can make me scream. Yet stick a needle in the back of my head for an occipital nerve block and I will sit still without screaming my lungs out. Although I did swear a lot the first time it was done. I know of other EDSer’s that can have root canal work done without local anesthetic, they don’t bother with it because it doesn’t work. Just thinking about that makes me break out in a cold sweat and want to vomit. Even amongst EDSer’s people that are used to pain, our pain thresholds are vastly different.

Arnie and I part ways when it comes to the remainder of the quote - “or have the indescribable feeling of pride you will have when you overcome it. This PAIN is not your curse ; This PAIN is your PRIVILEGE”  I may on a rare occasion feel pride when I have pushed through the pain and have managed to enjoy myself. However in the back of my mind I know that despite the feeling that I have achieved something I will be left dealing with the consequences for possibly weeks or months afterwards. I don’t actively avoid causing myself pain, to do that I would have to wrap myself in bubble wrap and never leave my bed. I know some in the medical community believe that those suffering with EDS develop what they call avoidance behaviors. We limit our activities and because of limiting our movements we cause weaker joints, tendons, ligaments and muscles. I don’t know of any EDSer's that avoid doing anything, we may not do certain activities because we know it makes things worse but we don’t avoid things irrationally. I know that I can’t lift things, lifting causes me horrific back pain. I don’t walk outside the house, I use a wheelchair, I do this so a) I don’t pass out and cause myself a head injury, b) so that my hips or knees don’t dislocate, c) because walking causes me extreme back pain,  d) the effort used in walking exhausts me very quickly, and  e) my balance is shocking and I tend to fall over. It’s not an avoidance behaviour it is self-preservation.

Pain the type that EDSer's live with everyday at no point could be described as a privilege or a badge of honour. I would also beg to differ on Arnie’s description of pain not being a curse. Pain on the levels I and many others deal with on a daily basis is a curse. It stops normal life in its tracks. It causes bad temperedness, anger, loneliness, vulnerability and sometimes a sense of hopelessness. How do you describe to someone who has never suffered the levels of pain you endure that you can not look to the future because you do not have the energy to cope with this level of pain for the rest of your life. It’s not depression (although it is incredibly common in people who suffer from chronic pain) it’s a reality. When you have used every last ounce of your strength to fight to the end of another day, who could blame you for questioning if you could do this for another 40 years or more?

Pain from exercise is short-lived and self-inflicted. If you only train a couple of days a week you would have more pain-free days than those that you suffer the normal aches from exercise. If you stop exercising altogether (I am not advocating this as exercise is good for you) or adjusted your routine so you weren’t exercising quite so vigorously you wouldn’t suffer the pain that Arnie describes.

The person that posted this on social media would have been referring to his own fitness routine and not about the pain that someone suffers with when they have a chronic condition. Maybe I have become too over sensitive to things or perhaps it is because I see things differently. Obviously the impact of this was worse because I had no clue that this was someone else’s quote, so I didn’t know the context of it. It is a prime example of why author attribution is not just important to understand the context but also to give credit for the work otherwise it is just plain plagiarism.

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Trike Update

On Sunday our friend came over to look at the Trike and the Wheelchair. He has resolved the issues with the handlebars and brakes. It felt a million times better after he had fixed the issues. I wasn’t feeling such intense pressure in my back when trying to steer it anymore.

On Monday the new battery came so on Tuesday I was able to have another little go on it. What a difference the new battery made, so much more power. I am a lot more confident now and no longer need Jay running alongside me to keep me calm. He also had a go on it and was freaked out with how fast it could go.

So my first outing with the dogs is planned for Sunday. This will be the first time since 2008 I have been able to join them. I am very excited. I hope I sleep Sunday night. I will be going out whilst it is still dark so we may not be able to take picture. I do have lights for the Trike so I am hoping that they serve me well. Watch this space!

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.

Caffeine Infusion #3

On Wednesday 24th August I had my third caffeine infusion, I had hoped by now to have had my epidural blood patch the only recognised treatment for someone who is severely impacted by a CSF Leak but unfortunately it seems that the hospital in which I am getting treatment are unable to convince their anaesthetists that regardless of the fact I have Ehlers Danlos Syndrome it needs to be performed. So the stop-gap treatment of a caffeine infusion every 4 weeks has become my only treatment for the last 12 weeks, despite the fact I sprang a leak in April this year.

When I found out on Monday 22nd April that the epidural blood patch would not be happening anytime soon my world imploded. I can’t fathom why, with all the medical evidence that states people who have a spontaneous cerebrospinal fluid leak are likely to have a connective tissue disorder and that an epidural blood patch is one of the few treatments to “cure” this condition that I am now being referred onto another hospital, The National Ehlers-Danlos Syndrome Unit in Bath. This is with the hope they have seen patients before with EDS and a CSF Leak and that they will a) perform the epidural blood patch b) If they can’t do the epidural blood patch refer me to someone who can. Leaving me feeling like a case of medical pass the parcel. Angry, frustrated, end of my tether didn’t even come close to describing how I was feeling. Although it is great that I am not just being left, this now means more waiting and I have no idea how long with this unit (the only type in the country) being massively oversubscribed.

I won’t lie I cried my eyes out with frustration and got slightly (well quite a bit) animated on the phone with the specialist registrar who has been treating me. I know it’s not his fault and he is also disappointed with the turn of events. I was so down about it all I could hardly bring myself to speak afterwards. The only good thing that came from it was that I was also going to receive my occipital nerve blocks at the same time as the infusion, something which they had been hesitant to do previously on the same day. However when you have over an hours travel each way to get to the hospital and your husband is having to take time off work every month so that you can get treatment, I think it’s more than reasonable.

Actually the occipital nerve blocks and the infusion wasn’t the only good thing to come from getting the appointment on Wednesday. My good friend Sharon was going to keep me company whilst I was having my infusion etc and I managed to rope her in as the photographer for my blog. I had previously been in contact with my new PoTs / EDS consultant who works in the same hospital and managed to get him to agree to pop in and see me whilst I was being treated. Due to the CSF Leak I have only been able to travel to the hospital when getting a caffeine infusion, so I hadn’t seen him since my first appointment in December 2015, although I had been in contact with him via email.

I also wanted my consultant to meet Sharon as for a while now I have believed that she is also suffering from hypermobility / EDS and she also has heart problems which maybe PoTs or Inappropriate sinus tachycardia. I can be a crafty bugger and knew that it would be a productive meeting for both Sharon and myself.

As it was my third time at the unit the staff recognised me, I am affectionately known as the caffeine lady. As caffeine infusions happen quite rarely (most people are lucky enough to get an epidural blood patch when their neurologist recommends one) and certainly not on a 4 weekly basis. I am lucky, many people are written off with the diagnosis of NPDH (new, persistent, daily, headaches), which means you have a headache of unknown cause which happens everyday. The only method of treatment for NPDH is painkillers, many people’s lives are changed forever due to the level of pain they are in. Many of those diagnosed with NPDH actually have a spontaneous cerebrospinal fluid leak and struggle for years to get the correct diagnosis. I do thank my lucky stars that for the first time in my life my symptoms are textbook perfect for a change and that I was diagnosed during my first appointment. However diagnosis is one thing acquiring treatment is another challenge.

This time rather than resembling a pin cushion the member of staff managed to get a vein first time but unfortunately the site was way too painful for me to sit with the cannula in for two hours. This guy obviously was good as he got the second vein first time. I have bruised but I always do and it is nowhere near as bad as the last time. For some reason with this infusion no ECG was carried out before or after and no heart monitor during. I did think this was strange due to the fact caffeine can mess with your heart rhythm. Even Sharon asked the nurse’s why there was no heart monitor and we were told that I didn’t need it. Funny though that when I saw my PoTs / EDS consultant he made a face when he saw I wasn’t being monitored and the specialist registrar when he came to do my occipital nerve blocks asked the staff to do an ECG when the infusion was finished. However that wasn’t done either.

I text messaged my PoTs / EDS consultant as soon as the infusion was set up to let him know I was in the building. He arrived soon after and must have spent a good hour talking to myself and Sharon. He wants me to have a 24 heart monitor put on to see if we can catch my erratic heart rates and he is going to write to my gp regarding prescribing melatonin to see if that helps me sleep as since the CSF Leak developed I either can’t sleep at all or sleep for hours on end but wake feeling like I haven’t slept at all. He is also going to come up with a medication to help relax my muscles that frequently go into spasm as the medication I was on previously caused me to suffer from vertigo. Something I didn’t realise until at his request I stopped taking them.

I then had my occipital nerve blocks and I have Sharon to thank for taking the photographs for me. Although I quite honestly say on seeing them I am thankful that I couldn’t see the size of the needle or how deep under my scalp it goes in. Sharon did provide a running commentary and she did say to me afterwards she felt quite faint watching. Thankfully the injections were not as painful as they were the first time, when I said I would never ever have them again and swore quite a lot. This time I managed not to swear and only kicked the table away when the registrar hit the sweet spot. With these injections it is important the doctor injects into the area that hurts the most so that you get the best results. Combined with the caffeine infusion this time I have had a better result which shows my pain is being amplified by the occipital neuralgia which has been triggered by the leak.

If you are of a nervous disposition you may want to skip the photos!

The occipital nerve block injections although painful really do help. I look at it as very short-term pain (4 injections, two each side) for long-term gain. The injections last about 4 weeks and it means I can lie down with the back of my head resting on a pillow, where as once they have worn off just the thought of doing that can make my eyes water.

The caffeine infusion has worked and the last one worked better than I appreciated as the headaches came back with a bang and were worse than ever two weeks after the infusion. So at the moment I am in the honeymoon period where instead of my head pain being in the range of 8-9 out of 10, it’s currently a 3-4 out of 10.