Pipe Dreams


A few weeks ago I read a post   by a fellow blogger-Mrs Hippy Geek  “A Wheelie Good Summer” and felt a sudden surge of hope. For the first time since I got sick 2008 there seemed to be a mobility aid out there that would allow me to accompany my husband when he took the dogs out on Woodbury common.

 I had to give up walking the dogs due to collapsing twice whilst out walking in areas at the time that had dodgy mobile (cell) phone signal coverage. It was very scary for me and even more so for my husband who had very limited knowledge of the common. Even if I had been able to call him for help, he would have been clueless to my exact location. Had I needed an ambulance due to my injuries, the air ambulance would have probably needed to have been scrambled.  The walks were also causing me to have excessive amounts of pain and fatigue. With great sadness we decided that this was no longer safe for me to do. Dog walking should never become an extreme sport.

 The problem with wheelchairs (standard ones at least) is they don’t cope well with anything other than a smooth, hard, flat surface. You can’t wheel yourself on a beach, cobblestones are a complete nightmare and if you happen to find yourself in an area where there are no drop down kerbs you can’t even cross the road. In built up areas people helpfully park their vehicles on pavements or obstruct the lowered kerbs completely. So despite the fact we have the wonderful invention of the wheelchair it still can be very difficult to get about.

 If you add in the fact that I need to be pushed (due to the fact propelling myself would result in dislocated or subluxed shoulders, torn muscles and ligaments) and trying to control three dogs (leads optional) you can see why accompanying my husband whilst he walks the dogs is completely impractical. An electric wheelchair or mobility scooter is equally impractical for where I want to go, neither would cope well with the sometimes rough / uneven terrain of Woodbury Common.


Woodbury Common

Excited and enthused by Mrs Hippy Geek’s blog post I quickly googled the Power Trike. Within a few minutes it became obvious to me that such an item was out of my financial reach at just under £2,500 excluding VAT. I also realised that my current cheap and cheerful wheelchair would not be up to the task of having the power trike attachment. Naively I thought sports style wheelchairs wouldn’t be that expensive. I did a quick Google search only to find they retailed at the same price as the power trike. This meant I would need funds of around £5,000 to achieve my dream of being able to experience Woodbury Common again as anything  other than a passenger in the car.


Travis on Woodbury Common

Link to the type of Wheelchair I would need

Link to Viper Power Trike

 A friend suggested to me that I start a go fund me page, this made me feel very uncomfortable. I have seen people’s reactions to others on social media, when they have set up these type of fundraising activities for what they perceive as personal gain. Apparently those who are chronically sick can raise money for others but to raise it for themselves is unforgivable. So for a couple of  weeks I have struggled with the idea of asking others to help me fulfil this dream. I will be honest if someone said to me you can have one thing back from your old life, walking the dogs would have been uttered before they had finished the sentence. I knew in my heart that it would take my husband and I years to raise £5,000. We aren’t poor as church mice but we certainly don’t have 5k lying around.

 I talked it over with my family, I didn’t want them to be embarrassed by me starting a go fund me page, they may have had the same reservations as I did. They were supportive and said why not? This did make me feel better. However I still wasn’t entirely convinced after all we didn’t know anyone who had started this kind of fundraising campaign. I chatted it over with one of my oldest friends, who told me straight away “you have to do this!” and by sheer coincidence she saw someone using a power trike a few days later and said it was totally amazing (and this person was walking their dog). My friend used the phrases “you so deserve this, you need this” and whilst it was nice to hear someone say it, I still couldn’t believe it. So I did what I always do in this kind of situation and buried my head in the sand. If I ignored the longing for the power trike long enough it might go away.

 Bless her heart Mrs Hippy Geek contacted me to tell me someone was selling a power trike on Twitter second-hand. I was really touched that she would think of me. Financially though we couldn’t afford one even second-hand at the moment as we have a couple of structural jobs on the house that need to be done asap and they are going to wipe out the savings we did have. This reignited my desire, it meant even if I raised just half of the £5,000 there was a possibility I would be able to kit myself out and get on with my bucket list dream of being up on the common with my dogs.

 Again the fear of being judged by others for asking for money got the better of me. I couldn’t bring myself to set the page up. My oldest school friend again told me to just do it and said “F*ck what other people think” (can you see why we are friends?) She also told me she would personally seek out and destroy anyone who was negative about it. She was exactly the same at school, she can be quite scary when she is on a mission! My worry that was I would get trolled by people for asking for help. I hate asking people for help, I could fall down the stairs and break my leg and would hesitate to ring anyone for fear of being an inconvenience. So the thought of  setting up a Go Fund Me campaign was really causing me anxiety.

I had only discussed the Power Trike and new wheelchair with hubby, my family and my oldest friend. I was too embarrassed to discuss it with anyone else because I would have to admit we needed their help in achieving this. I put it to the back of my mind, it was a pipe dream.

 Yesterday I had a friend come over for cuppa and a catch up, as she needed to use my computer to arrange her lift home, I showed her the video of the Power Trike in use. Like me she thought it was amazing and knew that it would mean I would have a sense of independence again. I told her about the idea of setting up a Go Fund Me page and raising money to be able to purchase it. She thought it was an amazing idea and wanted to help immediately. I explained my fears to her of asking for help and being judged by others and again she told me not to care. I don’t usually give a flying f*ck what people think of me but I was struggling with this one. After she left however I took the bull by the horns and set the Go Fund Me page up.

 It took me a while to work out the wording, I was very concerned that it shouldn’t look like I was begging people to donate and that it should be honest as to why I needed this piece of kit. I have written this blog post for two reasons, firstly to explain to those who are so very quick to judge with very little knowledge of me, why I was doing it and obviously to promote my campaign. I have set myself a target of a year to achieve this goal, obviously if I get there sooner it would be fabulous but I know it is a lot of money to raise.

 We are hoping over the next 12 months to set up a couple of fundraising activities to help us reach our target. I will be putting a regular amount towards it each month myself along with any birthday and Christmas money I receive over the next year. So I won’t be expecting others to fund this completely. If we exceed the target I will be donating the excess to UK Charities for EDS, EDS linked illnesses and PoTs / Dysautonomia.

 I have launched my go fund me page “Help me walk the dogs again   relatively quietly up until now as I don’t want to ram it down people’s throats and I also don’t want people feeling pressured into donating. If you want to donate that’s great and if you don’t that is fine too. 

Quick update :

I finally have my appointment through for my CSF leak, I am seeing the neurologist on 22nd June. It feels like a lifetime away.

Willow, Mollie and Frankie

Willow, Mollie and Frankie


Many thanks to S.R and I.C xxx


So for the first time since this shit storm started I broke down in tears. For so long I have tried to hold it all together but I feel like I am failing miserably. I know things could be worse, I could be dying and yes I know there are people out there much worse than me. I feel guilty that I have allowed this to consume me but when your days are mainly spent lying down wearing dark glasses because you can’t stand the light there is far too much time to think.


In all the years I have been sick, recognizably sick I have never felt so desperate for help. Today (Thursday) I rang the doctor’s surgery again because I hadn’t heard back from my gp the day before. Not only am I dealing with this suspected CSF leak but the politics of the medical profession. It’s a tight rope, I need to push for treatment but in such a way that I do not piss anyone off. I know that there is nothing that my gp can do, he can’t wave a magic wand and make it all go away. I need to see a specialist. However that is another problem because so far my referral has been ignored by the hospital.


Last night when dealing with a non health related issue I found out that the hospital that I have been referred to is refusing 9-10% of all referrals. 9-10% doesn’t sound like much but when this hospital is the largest hospital in the southwest, 9-10% could easily run into hundreds if not thousands. Referrals are being refused on the flimsiest of reasons and the decisions in some cases are being made by non medical staff. I am concerned that I may have fallen into the 9-10% for no other reason than I am not within that commissioning care group (the new fancy name for a healthcare trust). My gp was very concerned that I hadn’t heard from them and was now going to be chasing them up. I have to contact them next week if I haven’t heard anything by Friday. Unfortunately my GP is on holiday next week so I will be reliant on the surgery staff to chase it up for me should I have not had any contact from the hospital.


Whilst I was talking to my GP I ended up breaking down and telling him that I didn’t know how much longer I could do this for. Since Monday my condition has worsened and I have spent very little time upright. The pain doesn’t really respond to medications and I am going through Oramorph like there is no tomorrow. Initially when I was diagnosed I could live on one pillow when lying flat now however I cannot have any pillows and I found most relief when lying flat on my back with my legs in the air. The only place I can do this position is in bed, as this has a nice high headboard and is comfortable enough and big enough to share with 3 dogs who always want to be with me. Poor Nurse Frankie needs a serious amount of overtime paid for all the hard work has been put in looking after me.

I broke down and found it very difficult to stop crying once I’d started. It has been the first time in all this time that I had allowed myself to cry. I try my very best to hold it together whilst Jay is around. But it’s been weeks now and something has to give. My GP was sympathetic and told me he knew it must be very hard for me at the moment. As I said before I know that there are people worse off than me in the world. I have great sense of relief now and maybe finally things will start to be moving forward. I have friends, family and the love of a good husband, where many people have to fight their illnesses alone. Crying felt good, I needed it I have been bottling up my emotions for too long.


As I said this has been the worst week so far. As I  had a good weekend I believed naively I may have turned a corner and started to self-heal. Monday’s escapades of helping a friend complete her CV put me back to the Thursday when I collapsed. Everyday immediately on waking I have had pain, where as before that I would have had at the very least an hour or two before the pain kicked in. At some points over the last week I have had numbness in my right arm, intense photophobia, pins and needles in my face and much more ptosis (more dramatically) than I have had in a long time.


So after a day of feeling sorry for myself and having a cry I found the following morning I felt different. I no longer felt as if a black cloud was hanging over me. Physically nothing was different, I still had the head and neck pain but I felt able to cope with it. It had been a horrible week but I knew that the week would probably follow its normal course and the pain would start to ease up again, which it did. I actually managed to do (when I say do it was more like observe) things I wanted to. Hubby and I spent the two days he had off sorting out the garden, potting up plants. It is amazing the medicinal powers of a good cry and some sunshine.


The garden looks much better now and had I been thinking straight at the time (my cognitive ability declines the longer I sit up) I would have taken some pictures. We have rain forecast for the next few days and nothing ever looks as good in the rain. The garden as long as it survives the onslaught of slugs and snails will be looking even better in a few weeks time when the plants have grown, I will take some pictures then. We have chosen flowering herbs for a lot of the pots as they will provide colour all year around and bloom during the summer months. I am particularly enamoured with the Indian trailing mint, a plant that I didn’t even know existed until I found it online. It has been paired up with trailing Rosemary in hanging baskets, with this species of mint unlike others it’s will not crowd out the other plant. It smells absolutely divine, like all the herbs which was another reason why we chose herbs to plant.


Hubby and I are the least green fingered people I know, we kill plants rather than cultivate them. So we were very surprised when my mum pointed out that our Borage had self seeded, we now have 12 Borage plants waiting to be big enough to be potted on. The wonderful thing about Borage is that a) the bees love it b) the flowers are edible c) the leaves can be chopped up and served with cabbage. We have chosen plants that are all bee friendly, it is something I feel we should all be doing as without bees the human race would be in a very precarious position.


We also found out that we had parsley plants growing everywhere. I had assumed these green shoots were weeds masquerading as parsley. My parsley plant had flowered, then died last year after growing to the size of a small shrub. It was one of the few herbs I hadn’t managed to kill in the garden. So hubby set about carefully digging up the plants and potting them on. Our garden actually looks like a place where people actually grow stuff from scratch with all our little pots lined up on the garden table. I am also trying to get some sunflowers to germinate as I would love to have them in the garden.

As I expected there is still no news on the hospital front, it looks very much like I am going to have to chase this referral up again. Due to suffering from quite a bit of cognitive confusion, I am not exactly sure when my gp made the original request. I am guessing it was about 4 weeks ago. All the days have merged into one, I know this started the week after Easter, I should say I recall this started after Easter. I can’t be trusted to have that accurately in my head. It does seem like I have been waiting an age for this appointment but at the moment I feel like I can cope again, the world doesn’t seem such a dark place anymore.