Running for Recognition – why my husband took part in a half marathon in aid of EDS UK.

Running for Recognition – why my husband took part in a half marathon in aid of EDS UK.

Today is Father’s Day here in the UK, the day where most of us choose to celebrate the men in our lives. They could be our Father, our Grandfather or a Father figure; or like me, it could be the Father to our children. My husband is not only Dad, he’s also my carer. He’s ‘chief cook and bottle washer’ in our house (a saying I heard a lot as a child) and he works incredibly hard to do his best by me and our children, all three of them.

Though my husband Karl is biologically Father to my youngest son and my stepson, in reality he is Dad to all of our children. When my daughter talks of her Daddy, she refers to him. When she tells her friends at school about her Dad, it’s him she’s talking about. She is his little girl in every way shape and form; they play fight and play pranks on each other, they watch football together and play team computer games. Soon she will be towering over him, but she will forever be his little girl.

Recently she had her EDS diagnosis reconfirmed just like me (they like to do another check a few years after the original one to see if any thing has changed) . They’ve reclassified it now, called it Hypermobility Spectrum Disorder in order to try and make Doctors less fearful of the diagnosis, but it’s the same condition. As usual Karl was by my side at her appointment, listening in to all the advice we were given so he could help as much as possible. Then, out of the blue a few weeks later he decided to sign up for the Doncaster Half Marathon in aid of EDS UK with only a week or so to prepare! Why? This is what he said when I asked…

Why did you decide to run the half marathon?

Initially I decided to run the half marathon as a challenge for myself. My whole life is devoted to looking after the family and its meant I’ve let my own interests and hobbies fall on the back burner. Recently my wife’s health has deteriorated which has left me under more pressure, this has manifested itself in depression; something very common in people who care for their loved ones. I haven’t been to the gym in years, but I thought if I could complete the run it would be a great way to kick start my journey back to a more active lifestyle. My wife now has a home care package and we should hopefully be moving to a bungalow soon, this gives us both more opportunities for independence. Don’t get me wrong, I love my wife and children; I just don’t think people realise quite how high pressure being a carer and parent is. So, when I saw this opportunity I decided to jump at it.

What made you choose EDS UK as your charity?

As soon as I signed up for the run I knew EDS UK would be the charity for me. Both my wife and daughter are afflicted by Ehlers Danlos Syndrome and its important to me that I show them both that I fully support them as best as I can. I know about the illness due to my family being so heavily affected by it, but most people have never even heard of it. Since joining support groups and learning about the condition myself I’ve realised there are thousands and thousands of people worldwide suffering in countless ways because of it. For such a widespread condition there is so little exposure, I wanted to try and do my part to help spread the word.

How do you feel about the money raised, do you feel lack of knowledge contributed to the amount of donations?

So far we have raised £75; I know it doesn’t seem a huge amount, but I only had a week to fundraise. For the time I had to prepare I’m happy with the amount I raised, after all every little helps towards finding much needed research that will eventually help people like my family and I. Obviously we all want to raise thousands of pounds, I’ve even left my fundraiser open in case anyone still chooses to donate, but with the condition being so unheard of it can be difficult to raise money. Often people assume it’s just a case of having hypermobility (as it’s also known as Hypermobility Syndrome) and don’t realise the many debilitating effects EDS can have on a person. Hopefully the more visible EDS becomes, the more people will learn and be willing to donate.

Did you get chance to raise awareness through fundraising?

I hope so. I chose to run in the EDS charity vest which is bright yellow and very eye catching. From what I could see I was the only person there wearing one, so hopefully seeing me pass by got people thinking about the condition.

In the run up to the half marathon I also shared the fundraiser all over my local Facebook and asked people in the support groups to share too. My wife also shared the link from her Facebook page which she uses to talk about all aspects of living with EDS and her other associated conditions; last week her page got two thousand hits so hopefully some people stayed to read a little of the information on there.

Due to an injury I picked up three miles in, I ran alongside two women from around eight miles; they hadn’t heard of EDS before so I told them all about it and how it affects so many people. It felt good to be able to educate someone on the condition and also kept my mind off the pain I was feeling. Hopefully they will go on to tell other people about the crazy guy who ran the half marathon on no training to raise awareness of Ehlers Danlos Syndrome. I know that I’ve raised awareness in at least two people, I’m happy with that. If each of us could educate just two people then think of how many would understand the condition better, it could be in the millions.

Do you feel the aches and injury caused by the race gave you a better insight into life with EDS?

Oh yes, most definitely. I hurt so badly for three days solid after the run. Obviously I hurt where I’d injured myself by pulling my groin, but I also hurt everywhere else. Literally everywhere, even my fingers hurt. I do feel it’s helped me relate better to the pain my wife and child feel, particularly my wife as she was diagnosed later in life so has sustained a lot of strain on her joints. Injuries and sprains in EDS are cumulative, once a joint is damaged it never gets back to how it was (or this is how we have had it explained). Because my wife was unaware of her condition she used to push through her pain and fatigue, this has left her in a state of serious chronic pain. So yes, I do feel it’s helped me understand her better when she tells me everything hurts, but I’ll never know what it’s like to be in a degree of pain all day every day. I struggle to even imagine it.

Why didn’t you give up after the injury?

I didn’t give up for several reasons. Firstly, this was a personal goal of mine and it meant a lot to me to complete it; also I wanted to give those who had been kind enough to donate their monies worth. Most of all though, I wanted to make my wife and children proud.

At around eight miles in I collapsed in pain by the road, I thought I was done and rung my wife to tell her I had failed and would be getting collected by the sweeper bus. I really believed I couldn’t go on.

My wife told me how proud her and the kids were of me, that whether I completed it or not I was a winner in their eyes. She also put the phone on speaker so my children could shout words of encouragement down the phone. This was the first time she had been alone with the children for over a year, but she reassured me they were all being great and her carer was due any minute meaning I could walk the rest of the run if needed. She encouraged me but didn’t pressure me.

The two ladies I mentioned earlier offered for me to tag along with them as they weren’t going to be rushing and running in a group is always easier. Much like when battling an illness, support is key. Thanks to the mental boost from my call home I was able to catch up with the ladies I’d met and complete the whole thirteen miles. I’m so glad I did as I wanted so badly to earn the medal and give Ehlers Danlos the exposure it deserves.

What do you think about the way doctors treat EDS? (how much knowledge they have, their willingness to treat patients with the condition?)

After seeing how my wife is treat due to her condition I know for sure that more research needs doing into the condition and the problems it causes. When my wife is taken into Hospital and has to spend her time educating almost every doctor she sees about her condition you know something isn’t right. We have travelled to London more times than I can count because there are so few specialists North of the capital. What’s even more disheartening is even when you do see a specialist in Ehlers Danlos they will more often than not refuse to treat any of the issues it causes! Often we are left feeling disappointed and hopeless. I can’t talk for other countries, but in the UK something needs to change. Even issues not linked to the EDS don’t get treatment, my wife has an aneurysm and she’s literally been told that she’s lucky it’s not in a spot that will kill her if /when it busts as due to her EDS they won’t consider surgery on it! Things need to change.

As a parent and partner how does EDS affect you?

Ehlers Danlos has completely changed my life despite me not being a sufferer. I had to give up a well paid job around four years ago in order to become my wife’s full time carer, my friendships have all but fizzled away and I’ve had to put up with a lot of negativity about not working.

Since leaving work my partners health has deteriorated. She has developed Cranio Cervical instability as well as other issues with her spine, this means she relies on me to get around and has to be laid in bed a lot. The stairs are dangerous for her as her legs go from under her without warning, so on the rare occasion she makes it downstairs I have to bare her weight over my shoulders. This is not only dangerous it’s also caused me to injure my back. Hopefully we will soon get a bungalow that will suit our needs better and my wife will get a PA, but even then I’ll be her carer. It’s unlikely I’ll get back to work and if I do it won’t be in a job with long demanding hours like before.

With my daughter I do find it tricky. She’s at an age where hormones are beginning to fly around her body and it’s hard to tell what is a hormonal meltdown and what is her body telling her she is in pain or needs to rest. Even she doesn’t recognise the signs that her body has had enough for one day yet, so it’s very hard for me to. Sometimes I don’t pick up on when she’s actually in pain, I’m trying to improve on that.

As much as I know about EDS I’ll never actually know how either of them feel as it’s not my body it’s hurting.

Will you be doing more events?

I do plan on doing more events throughout the year and will be proudly sporting my EDS vest at each one of them, though I won’t be doing another thirteen mile run on no training any time soon! Some people think I’m stupid for taking on the Half Marathon at such short notice, but I’m glad I did it as its proved to me that I can still achieve my goals. Currently I’m considering another local run through Yorkshire Wildlife Park, its a 5k run with a fun run that your children can join if they like. The entry fee goes towards the conservation of the animals at the park, including Zebras (which anyone with EDS will know are our mascot). I’ll also be raising sponsorship for EDS UK. Plus I’m on the lookout for other local events, eventually working up to doing Tough Mudder and such. I hope to get plenty of use out of my EDS vest!

Any further comments?

The only thing I want to say to anyone out there who is battling this illness is never give up. I know it’s hard; there are days my wife can barely move for pain, days where the lack of medical help gets us all down to rock bottom, but don’t give up. As long as people keep up the fight to raise both awareness and funding there’s hope that things will improve; never give up that hope.

If you would like to donate to Karl’s latest fundraiser please click HERE. I’ll update the link each time he starts a new one, so feel free to check back if the current one has finished. There’s still time to sponsor his half marathon!

All professional photographs accredited to Nullstack Ltd.

Medipen, The Big Decision. 

Medipen, The Big Decision. 

Many months ago I wrote a blog about my decision to use a cannabinol vape pen to help with my pain. Cannabinol is an extract of cannabis, which doesn’t get you high. It does however claim to have many health benefits and I was interested to see if these were true, or just yet another money spinning hoax aimed at taking advantage of desperate people. 

Initially I intended to write up my findings within a month or two of trialling the product. But life had other ideas. So here I am, several months and a major surgery later, ready to share my findings…

First off about the pen itself. I found the product very easy to use and nice and light to hold. The width is similar to that of a good ballpoint pen, as is the length, so a great size to carry around. I bought a second USB charger to have in my handbag, this allowed me to have one at home and one for if I ran low when out and about. The second charger was pretty redundant though, these little gadgets hold their charge surprisingly well! Usually I would just pop it on charge in my laptop as I did a little ‘work’ (writing, checking Facebook, photo editing, checking Facebook, networking, checking Facebook) and it filled up in no time. Overall for simplicity and style I was very impressed. 

Contents of the Medipen starter kit.

As a none smoker I was incredibly nervous about using something which reminded me so heavily of a cigarette. Particularly in the way I had to inhale it. I wondered if I would get used to it, or even be able to tolerate it at all? 

Medipen contains no nicotine at all and is in no way addictive. 

I need not have worried. Medipen cartridges are available in many different flavours, more than I would have imagined! I tried the mint, cherry cola, coconut and white grape. They were all pretty good, though the coconut tasted a bit too much like a Piña Colada for me! I was surprised at how much flavour you could pick up just from inhaling vapour, the taste was really enjoyable! My favourite was by far Cherry Cola with White Grape coming a close second. What was also nice was that inhaling the sweet vapour helped me eat less actual sweeties, something I do far too much of when I’m in pain. Plus, the vapour has some of the scent in it from the flavour. I became my own air freshener whilst vaping! 

Not that there is much vapour cloud. Another thing I was worried about was filling my home up with a damp cloud of acrid smelling fog. I’ve been in ecigarette shops before where you can barely see your hand in front of your face. I didn’t want that for my home, and I’m glad to say I didn’t get it. The Medipen uses a wick to draw the vapour up to your mouth, meaning you get a steady amount. You really have to draw hard on the device to form a large cloud, and honestly there’s no need. A gentle inhale for a few seconds gets you plenty of vapour, flavour and cannabinol; without billowing out smokey mist clouds for all to see. The Medipen is discreet. Refined. Classy. 

What I expected vaping to be like on the left, versus what it was actually like on the right.

As far as usage goes it’s really up to you. I found that a few minutes of use on a morning, at lunchtime and before bed suited me. Though occasionally I would use it in between if I was having a bad day. I liked to keep my pen with me as knowing I had the extra help was a comfort in itself. My level of usage meant each cartridge lasted around three weeks, even with my husband stealing some for the occasional headache or general ache or pain. By the end of the experiment he was using the Medipen each evening with me as he found it also benefitted him in some unexpected ways… 

So that’s the basics covered. Now down to the important part. DID IT HELP??

Honestly, I have to say that yes it did. I was completely ready to be disappointed and instead was very pleasantly surprised. Do not get me wrong, the Medipen is not a miracle cure, but it did help me with my multisystemic problems. My pain was decreased to the point that I could function better. I could move without wincing and walk without feeling as stiff. On some days I even managed to reduce my pain relief, something I have not been able to do since I went back on my medication after giving birth to my son. 

The evening ‘dose’ relaxed me and calmed the random cocophany of pains and sensations I usually have cascading through me. I have Dysautonomia which causes my body to always be on high alert. Settling down for rest when your body is tick tick ticking away is never easy. In fact it’s nigh on impossible. But with my Medipen I could feel my body calming and the tension easing from my muscles. Though it could often still take me a while to drop off, the chances I would sleep were higher. Plus, the sleep I did get was much more restorative than usual. A benefit I’d read about, but been highly sceptical of. 

It was due to the help I had with sleeping that my husband decided to try the Medipen one evening. He himself is a restless sleeper and spends many nights tossing and turning. I gladly offered to share, why should I be the only one reaping the benefits of our new little doohickey? Surprisingly he dropped off within minutes. Much faster than I do. I guess that’s the benefit of a properly functioning body, things work better on you! But what was even more surprising was what else happened that night…

If my husband used the Medipen before sleep not only would he rest better, he slept silently!! NO SNORING!!!

Usually my husband not only snores; but talks, moves and sometimes even gets out of bed! To be calm and quiet was not only got for him, it was GREAT for me! My often tired and grumpy husband woke with a spring in his step, and I didn’t consider committing murder each night. Definitely a win win! 

As always I woke on a morning feeling like a dogs dinner. But, I did find that whilst using Medipen that feeling subsided faster. Usually I don’t see mornings at all. During this trial I woke around 9/10 am each day. After an hour or so to come around and allow my heart medication to work I could actually get up and dressed. I had the energy to go out and do things, or cook, play with my children. I could be a ‘real’ mum! 

My main worry was having even less energy whilst using this product, I couldn’t believe I had more! 

Yes I still had to be careful and pace; I couldn’t do as much as ‘normal’ mums could. But I could do enough to give me my smile back. Enough to make my children feel they had more of me. I could be present in my own life. We went on holiday towards the end of my trial, a break at a holiday park in Yorkshire. On every other holiday we’ve been on my husband has taken charge, but not this time. I not only participated, I had fun. I was out doing things with the kids every day. Ok, by ‘doing things with’ I mean I watched them doing activities; but that’s 1000 times better than being stuck in the van whilst they go have adventures without me! 

Having fun with my kids on holiday.

I found that even during the day the Medipen calmed me. Not so as the make me sleepy, just to make things easier to handle. When your body is constantly in pain, and teetering on the edge of ‘fight or flight’ mode, it’s easy to have a meltdown. Me seeming moody or snappy is commonplace in my household. Crying feats and explosions of anger are also not unheard of. During the trial these episodes happened much less often. In fact, when things happened that would usually have my heart racing (more than usual) and adrenaline cursing through my veins, I actually managed to remain calm and carry on. My driving improved, how I coped with others driving improved. I had more patience and could shrug things off better. 

Of course nothing is perfect. At times my pain would still sneak through and bite me on the bum. Also, I did find it hard not to forget that though I was feeling better I wasn’t ACTUALLY better. The Medipen is not medicinal. Whilst it can take away feelings of pain etc, it does not cure the underlying cause. I did end up crashing a couple of times during this trial and ending up back in my bed. It’s easy to do too much when you start to feel human again. But it’s a learning curve. One that I was happy to be on! I’d rather crash from doing too much than not be able to do anything at all! 

But; I hear you asking yourself, why is this blog in past tense if the product is so good? Why is she not using it anymore? Well my friends, that’s where the surgery comes in. As cannabinol is still so new to the medical community, and not yet sanctioned by the NHS, I was advise to stop usage before my operation and for a time after. It’s now a month since my surgery and I realise that now I have to make a decision. 

I thought my big decision was whether to try the Medipen, in fact it’s whether to continue to use it long term. 

The Medipen is by no means a ‘cheap option’. Living on disability benefits the cost per cartridge is arguably quite high. (Though I must point out it’s much cheaper than smoking!) I have to ask myself, are the benefits of the Medipen worth the financial implications? Would I be better spending that money on other things? Am I being selfish? Would my family be better off if I used the money elsewhere? These are all questions I’ve been wrestling with for the last month. As I’ve been pretty much bed bound, struggling to sleep and barely coping with my pain. Can I take money from our family pot and spend it on me?? 

The answer is yes. 

Because when I do better, my family does better. My relationship with my husband improves. My children are happier. Life in general is just easier. Sure, I could use that money on toys, trips out or takeaways. But they hold no real value to my family. What we need is to make memories together. I want to be at the park, feeding the ducks with my husband and baby. Not home watching videos of it on my phone. They want me there too. I’m sick of being backstage in the show that is my family’s life. It’s about time I was up front and centre! I owe it to them, I owe it to myself! 

So tomorrow I order my new cartridges. I restart my Medipen journey; and I hope I see the same results. Then, in the spring, I hope to be writing an article outlining how I’ve found long term use of Medipen. I really hope that, unlike with medications, the benefits do not ware off with time. I’ve got a good feeling that they won’t… 
*Please note that I received my Medipen and cartridges free as a Thankyou for writing about my experiences. All opinions in this blog are honest and my own. 

There is another way…

There is another way…

In the last few months my levels of pain and exhaustion have hit a whole new high. This has left me pretty much bedbound most days. Then awake and restless at night. Alongside all that, my Gastroparesis has flared, meaning I’m nauseous almost all the time. My stomach feels full and bloated and eating, or even drinking, causes severe pain. When everything piles up like this it’s hard to cope. I found myself breaking down and sobbing on an all too regular basis. 

I’m already taking slow release Tramadol, Paracetamol and Codeine for my pain. I also have Gabapentin for nerve pain and other issues. 

Please note, it is not generally advisable to take Tramadol and Codeine together. I have special permission from the pain clinic and have been given clear instructions on safe dosage. Please don’t ever take medication that is not prescribed to you, or at a higher dose than prescribed by your GP. 

I cannot take anything Ibuprofen based due to my IBD, nor can I take many of the anti nausea medications that are on the market. During my last Gastroparesis flare my GP tried me on many of these medications, they either didn’t work, upset my bowel, or worse. What could be worse? Giving me the symptoms of a brain tumour, that’s what. My body reacts to things in very weird and wonderful ways. Waiting for my test results to come back after I’d been told I was displaying all the signs of a prolactinoma was one of the most terrifying experiences of my life, one which I do not intend to repeat. 

So, as you can imagine, my options are now pretty limited. Basically there’s only one thing to move up to. Morphine. Be it tablet or patch form, it doesn’t matter. That’s the only thing left. I discussed this with my husband. Yes, I want to feel better. Yes, I want to be up and about more. But Morphine? I’m thirty years old.  Do I really want to put my, already dysfunctional body, through that? I know that Morphine is a strong pain relieving option. But I also know that any pain relief doesn’t seem as effective on me as it is on others, this could be down to my dodgy collagen. Even in hospital when I’ve been given Morphine intravenously, it’s not had a major effect. I never ever get spaced out or super relaxed. It just doesn’t affect me that strongly. So I’d be putting my body through all that stress, for a minimal effect. I don’t think it’s worth it. 

But what other choice did I have? None. Or so I thought. Soon after our conversation my husband saw an article about the Medipen which he sent over to me. Basically the Medipen is a vape machine which uses extracts from the Cannabis plant, combined with coconut oil. The extracts are completely devoid of any of the chemicals which cause the feeling of being ‘high’. They purely contain the chemical which has the most benefits, CBD. I’m not going to lie, I was wary. Very wary. Cannabis has a lot of stigma around it. Then add to this the fact that you inhale it in a vape machine, meaning you look like you’re smoking. That was too much. 

I’m not anti Cannabis. I don’t believe it’s a big evil drug that is bringing it to its knees. Honestly I don’t. Used in the correct way, I can see why it could be popular. However I am anti smoking. I do not smoke, have never smoked, and have no desire to. I’m not going to lecture people about their life choices, but in my opinion my body has enough wrong with it without me adding to the list. When you think of Cannabis that’s what comes to mind. Smoke. Lots and lots of smoke. Spliffs, bongs, hash briwnies. But mostly dingy rooms full of pungent acrid smoke. That’s the stereotype. The stereotype that is widely spread and etched into people’s minds. But that’s not me. I’m a mother. A none smoker. A disabled member of the community just trying to make the best of my life. 

My initial reaction to the Medipen wasn’t great. But I read the article. I researched. I looked on their website. Mostly I checked out the reviews. Page after page after page of people thanking the company. People with Cancer, MS, Chronic Pain, Chronic Fatigue, Insomnia and bowel complaints, all were seeing results! They were gushing about their great experiences. Better sleep, less pain, more energy. The reviews were astounding. Many even called it life changing. My viewpoint started to shift. Reluctantly I discussed it with my doctor. Terrified by his reaction. What if he thought I was a pot head? I couldn’t believe my ears when he told me to go for it! Recently another patient of his had tried a similar product and had excellent results. He agreed it was time I started thinking outside the box in order to improve my day to day life. Wow! The (unofficial) go ahead from my doctor! 

That night I contacted the company and arranged for my sample. I’ve been anxiously waiting for it ever since. Desperate to try it, but afraid the hype was too much to be true. Honestly, I was afraid to even hope. As for the stigma? I put it out of my mind. I told myself, who cares what other people think?! I need an improvement in my life. I cannot keep going like this, and I don’t want to take opiates. Besides, as with stigma about anything, we just need to raise our voices and educate. Show people they’re wrong. Highlight the true facts of the matter. 

My Medipen arrived this morning. I’m looking forward to seeing how I go with it, and updating you all on my experiences; from my initial reactions (including reactions to it from those around me) to the results of longer term use. Here’s hoping it’s all positive!! I’m just happy I actually have something to place my hope in for once. 

Its arrived!!