Pipe Dreams

A few weeks ago I read a post "A Wheelie Good Summer"  by a fellow blogger-Mrs Hippy Geek 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

Info on Viper Power Trike

Info on the type of wheelchair I would need

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

Many thanks to S.R and I.C xxx

Tears

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.

The last week

The last week has been very up and down so this will just be a quick update.

I want to thank everyone who sent me messages of support after last week’s blog post it meant a great deal to me. Many of you I only know through blogging and we have never met in real life, thank you for showing your support.

On Friday last week I had a phone call from the bladder and bowel care team (I get a yearly phone call). On this occasion I was telephoned by the lead nurse, this was the first time I have had any dealings with her. To put it quite bluntly she was horrified that I had been shown how to catheterise and then left, with no investigations taking place. Especially as my symptoms are indicating Fowler’s Syndrome. Whether it is or isn’t she couldn't comprehend why I had never seen a urologist. The plan is now that as soon as my CSF leak has been treated (and hopefully fixed) I will see a urologist and have the relevant tests. The head nurse is also going to ring me once a month to keep in contact. It was so nice having contact with someone in the medical profession who listened and wanted to do something.

I had a good two days over the weekend,  this would have possibly lasted longer had I not decided to push my luck and help out a friend by putting together a CV (resume). It took much longer than I had anticipated and by Monday evening I could have cried my head was hurting so much. Every time I raised my head from the pillow the pain throbbed with every beat of my heart. It hasn’t settled since and yet again I am writing a blog post laid flat with my chromebook balanced on my knees so that I can see the screen.

I am hoping the coming week is kinder and the pain starts to settle. I am chasing my gp today to find out what is happening with my epidural blood patch as I have heard nothing from the hospital as yet.

To cheer myself up I have bought some plants for the garden, if it is dry on Sunday I will be issuing planting instructions to my husband. I am hoping the weather settles soon so I can lie down outside rather than being stuck inside all the time,

So that has been my week, very rock and roll!

Miserable Cow

I was going to entitle this post “angry as f*ck” but it sounded a little aggressive, so I went with miserable cow instead. Miserable Cow fits me perfectly at the moment, I am angry all the time and along side the anger I am feeling miserable. Everything and everyone seems to get on my very last nerve. I feel like I am staring into a big black void and no one is getting how thoroughly hopeless and vulnerable I feel or maybe they are, I don’t know.

I seem to be right back at the beginning again when I first got sick. I carried an immense amount of anger then. At the time people pointed me towards the five stages of grief ( anger, denial, bargaining, depression and acceptance). I seemed to bounce between these feelings within the space of hours sometimes minutes but underneath it all there was a rage that was so difficult to express or explain to others. I seem to continually hover between denial ( so I sit up and ignore the crushing pain in my head), anger and depression.

It is immensely frustrating when you are suffering from constant pain and you can’t seem to get people to understand just how awful it is. I have been lucky I haven’t been as bad as I was when I had to call Jay (hubby) out of work as I had collapsed. However there have been a few days of late where it’s been pretty close. I have wanted to call him and ask him to come home, he would if I asked him to. The issue is that in the long run this would cause more problems that it would cure. He could get into trouble due to the amount of time he has had to take as emergency leave and then there is the issue of money. Does he take the time unpaid leaving us short of cash or does he take it as holiday using up a day’s leave, when he might need it at another time when I am worse than I am now? So not only do I have to struggle on with this alone I have to constantly consider the ramifications for Jay.

I know the stress on him must be reaching a tipping point. He is constantly exhausted balancing work, me, dogs, running the home and family. Due to the fact that we have no family where we live, we are isolated. There is no one to share the strain. Family you can call at the drop of a hat and ask for their help, as they tend to live nearby. It’s more difficult asking friends as they have their own families and work to worry about. I know if it was an emergency that I could count on them but there is something in me that feels I can’t ask. I don’t know if it’s me being stubborn and refusing to admit that things really are that bad or if I know from past experience that leaning too hard on people makes them disappear - after claiming all you need to do is ask. Back at the end of the summer I faced a similar situation where I needed help. Friends stepped up but others who claimed to be friends disappeared. No text messages, no contact they simply vanished and the same thing is happening again, with the same people.

So that is one source of my anger, I do everything I can to help my friends. I open up my home, they know that they can call me day or night, turn up on my doorstep and I have done that for years but when the shit hits the fan for me, it’s radio silence.

I have to admit pretty much everything is annoying my already frayed nerves. I never know from one day to the next what or who will receive an outburst from me. I don’t like it and try very hard not to lose it but when on social media if I see casual racism “immigrants” or factually incorrect posts, like blaming President Obama for 9/11, I can’t help myself. I try to just scroll past idiotic posts but sometimes the urge to point out the facts overwhelms me, It’s making me really popular as you can imagine. So now I am trying to lessen the time spent on social media for fear of reducing the circle of people I am in contact with even further.

I am not making excuses chronic pain changes you, most of the time I have it under control but since this suspected CSF leak started I have found I am no longer a nice person to be around. I bore myself moaning about how my head and neck hurt. I feel like I have nothing to contribute because my life is so boring with constantly lying down. I mean what do you talk about when people visit or text when all you have been lying down 24/7. I know my life is really no different from before but the pain is affecting me in so many ways, that I feel I have lost so much in such a short space of time that I am not coping with it well mentally.

You see it’s not just pain although the pain is the source of many of the other issues. I am not sleeping, roughly getting around 4 hours of unbroken sleep per night, not good for your mood. The back of my head and neck have become very sensitive so lying down is causing more pain but sitting up means it feels like my head will explode.

I also get the “how can you be in that much pain but still produce a blog post” the implication being that I am exaggerating the amount of pain I am in? Maybe I am being oversensitive? It is quite possible. The worse thing is that this question has come from people within the chronic illness community. They are a really judgemental lot, sad really. So for those of you that can’t understand how I produce a blog post and be in pain here is a breakdown of my day.

Every night at present I am waking up between midnight and 1am due to the pain at the back of my head. Some nights I lie in bed for a few hours waiting for hubby to naturally stir so that he gets as much sleep as possible. On occasion I have to wake him so he can help me get downstairs, either because my lower back is kicking off or I just can’t stand lying in bed anymore. Sometimes I just wake up, on those nights / early mornings I can get up for a bit before the pain starts to kick in. I never know exactly how long I have got pain-free it could be minutes or if I am lucky it’s an hour or so. Blog posts tend to get written in the middle of the night. This post was started at around 3am, lying on the sofa with the Chromebook propped on my legs so that I can see the screen, I am wearing sunglasses despite it being dark outside as the CSF leak has brought along it’s friend photophobia, so I can’t stand bright lights and that includes computer / phone screens / TV sets.

“Why do you still write if the pain is bad?” Ever heard of the distraction technique? It’s the kind of thing they teach you at pain management. I have never been to a pain management clinic as it is believed that I deal with my chronic pain well. I would beg to differ at the moment, I feel like I am drowning. As soon as the pain starts no matter how bad it is on a scale of one to ten, I know by the end of the day it will be at the top end of the scale. Oh and did I mention the double vision, nausea and tinnitus that goes with it or the altered sensation on the right side of my face?  So when I am able to write a blog post I seize the opportunity because it gives me the chance to vent my feelings. But I forgot it’s not allowed because I have to conform to the minority of the community's idea of what sick or in pain should be.

So not only am I being judged by the “norms” but I am also getting it from the chronically sick community. When you are in as much pain as I am in every day there are very little f*cks left to give. If you don’t like my blog posts, feel jealous that I write them or don’t feel I am sick enough, please just jog on. Because I am not prepared to play the game of constantly explaining myself or trying to justify my actions to you. As you can see a little bit of miserable cow came out then, sorry!

I have in, the what seems the vast amount of time spent flat on my back, found a hobby of sorts. I have been taking lots of pictures of my dogs and posting them on Instagram. When I am more with it I will devote a post to my recent pictures. In the meantime if you are on Instagram you can find me at racheljillmorrismcgee, my feed includes both pictures of me and the hounds. Below is a taster of the kind of pictures I post.