Diagnosis and Dr Google

It is two years next month since I received my diagnosis of Ehlers-Danlos Syndrome (Hypermobility Type). Whilst that day marked the official diagnosis, I had already come to terms with the likelihood of being diagnosed, thanks to my physiotherapist and GP doing large amounts of research, to try and find out what the hell was going on with my body. I had naively thought that receiving the diagnosis would make my life a lot easier, with more doors opened to treatments and medical professionals suddenly understanding more about my body’s complexities. The reality is almost completely the opposite.

My treatment hasn’t changed. That isn’t a criticism: I have a fantastic physiotherapist (I’ve said this millions of times before) who knows my body almost as well as I do and she has gone above and beyond her normal duties on numerous occasions. Physiotherapy for me is a necessity. I need it to keep my body working as well as possible. Sometimes I resent it, because most average 24 year olds don’t need an hour of physio every week to keep their bodies moving and to try and reduce some of the ever present chronic pain. I have laughed, cried, fainted and vomited my way through these sessions: I am my physiotherapist’s longest standing patient. This is not an achievement that I am proud of, but it suggests why we have a close patient/medic relationship.

As for doors opening, entitling me to new and different treatments, that hasn’t happened. A few months ago, I was assessed to see if I was a suitable candidate for an inpatient rehabilitation programme and the nearest orthopaedic hospital to me. I didn’t pin my hopes on it, the aim of the programme was to reduce pain and try and speed up the healing of temporary conditions. EDS isn’t temporary, in fact, it is the opposite. EDS will and is getting worse and I will not heal or get better. I’m grateful for my good days because I know that they are going to be limited. I was given a provisional place on the programme, on condition that I stayed fit and healthy in the run up to the programme starting and reduced the pain relief that I was taking. Well, that plan went tits up. I lost my place, due to my shoulder having an on-going wobbly, causing the mumblings of further possible surgery to have my joint fused. Although the main reason that I lost my place was due to the spontaneous combustion of my right hip aka tearing the cartilage around the joint for the third bloody time. Much like the other two times, it has turned my little world upside down; I wasn’t able to work, I spent most days in bed due to pain and being so knocked out. Instead of reducing my pain relief, I have ended up increasing it and have added oral-morphine to my daily drugs regime (that is some good stuff) and it contributed to my mental health plummeting.

Unsurprisingly, my place on the programme was withdrawn and I felt like a complete failure. The only “cure” for my hip is to have surgery. Again. However, I’ve been told that I’m not fit enough and I don’t want surgery, so that is on hold for now or until my hip gives up completely. So, yes, I am in crazy amounts of pain, often a bit off my face on pain relief and in constant fear of my hip getting worse. I am forcing myself to carry on. I’m not brave for doing this, it’s something I have to do.

EDS is classed as a rare disease. It has become slightly more prevalent in the two years since I have been diagnosed. Roughly 1 person in 1000 has some form of EDS and more people have heard of it, as it is getting more press coverage. With this, however, the number of people self diagnosing themselves with EDS is rising. EDS is not the same as being hyper-mobile. EDS isn’t glamorous. It’s endless waiting lists, doctors not knowing what’s wrong with you, unexplained medical complications, daily dislocations – which become the norm, cardiovascular problems, gastro problems, respiratory problems, complications with your skin and blood…I could go on. It is not being able to do the splits or being able to crack your joints.

Self-diagnosing with the help of Dr Google isn’t helpful for anyone. It’s offensive and insensitive to those who genuinely do have EDS and it is potentially harmful to your own health if you do self diagnose without any medical input. The chances of being diagnosed with EDS are slim. It’s a rare disease ergo not that many people have it. Relying on webpages and assuming that you fit the criteria is likely to cause anxiety and worry, potentially for no reason. If the diagnosis of EDS was as simple as looking online, people would not need genetic testing, occupational health and physiotherapy input, haematology input, diagnostic scans, rheumatology input, not to mention years of being brushed aside. Self diagnosing belittles and takes away the legitimate struggling that those who have EDS go through every single day.

The nature of turning to Dr Google to find out what’s wrong with you can also lead to mis-diagnosis when there is something genuinely wrong. It’s unlikely, but there is a chance that you could have a totally different and unrelated illness, which you are passing off as EDS.

Whilst this sounds like a bit of a rant, and in truth, that is what it is, it concerns me that EDS is being made out to sound like a cool or trendy illness to have. It isn’t. There isn’t anything glamorous about it. It is already so difficult to receive the correct treatment in helping to live a fulfilled life and this becomes harder when people label themselves incorrectly. Don’t aspire to have a chronic and degenerative illness. There’s nothing cool about it.

 

 

Human vs Bionic

It’s been over a week of me being on official bed rest. Official because it was decided by my GP and my physio, not a case of me having a really long and lazy week.

This could just be a bad Ehlers-Danlos related flare up, although so far, the medical professionals seem to be thinking otherwise. The truth will be in my appointment with my consultant later this week. Either way, something has happened to my hip. Hip pain automatically sends me into a spiral of anxiety, purely because I have had two operations on my right hip before and there’s always been the underlying threat that my human hips aren’t going to last me much longer and I will have to turn bionic. Part of me is currently saying “yep, get rid of the human hips, I can’t cope with them anymore” but I’m kind of attached to my hips, literally and metaphorically. No one told me that they would only last(ish) 24 years – where is my refund?!

So, anyway. It’s been a long week, broken up by sleeping, binge-watching Waterloo Road and counting down the hours and minutes until my next dose of the magic pain relief. And there’s been crying. So. Much. Crying.

Rewind ten years and my life could not be more different. I was dancing three plus times a week, playing netball and hockey, trampolining and was walking two miles a day to and from school. Now, I can barely walk downstairs and have resorted to shuffling down on my bum when no one is looking because it’s quicker and easier. I’ve probably said this before, but I’m not a jealous person but seeing my friends going out and living their lives so spontaneously is painful. Punch-you-in-the-stomach-at-the-normality-of-it-painful. Anymore than two hours out of bed at the moment completely exhausts me and it’s a tiredness that I struggle to put into words. My life is on hold, waiting for the next medical appointment: hoping to get some clear answers, waiting until I can next take meds (the hour before meds time is literal hell), waiting until I’ve got enough energy to try and get out of bed, even if it just to the sofa. Endless waiting, only I’m not entirely sure what I’m waiting for. Because I’m not going to get better, I’m stuck with this life-sucking disease, which no-one really knows about, waiting for the next part of my body to fuck up. It isn’t just bad joints…if only…it’s all the stuff that you can’t see: the gastro problems, the blood problems, the respiratory problems, the electrolyte problems.

rodney-grahame-eds-quote

I’ve more than had enough. Obviously, there is a huge correlation between physical health and mental health and I don’t think it will shock anyone when I say that my mental health is also taking a bit of a battering at the moment. The anxiety of my current situation aside, I just feel so so sad. I feel stupid for being sad, but hell, I think, maybe, feeling crap is deserved and I need to work on validating my own feelings instead of brushing them away.

Something that I have learnt over the past week or so, is how bloody great my friends are. One of my friends told me a while ago that she had read up about EDS online so that she could try and understand a bit more what I’m going through and honestly, it’s probably the nicest thing that anyone has ever said to me. My friends are all incredibly understanding and get that when I cancel, it’s not because I’m being a flake, it will be because I am utterly exhausted and can’t function or am in more pain than is my normal and can’t function. I hate cancelling on people, but sometimes it’s got to be done. Over the past week, a couple of my friends have made the effort to text me every single day. Not necessarily to see how I’m doing – my reply doesn’t vary much from “shit” or “crap” or “meh” and no one needs to hear that all the time! They will tell me about their days, send me countless memes, bitch about things they’ve seen or heard. Basically, they are trying, possibly without even realising, to keep a bit of normality in my life. I might not be able to get out of bed, but I’m still interested in other people’s lives. I still care deeply and want to know if one of my friends is having a crap time. Physically, my body isn’t working all that well, but mentally, I’m still here. Sometimes I’m a bit nonsensical because of morphine (shout out to that stuff) but I still want to be involved. I want to stay connected to the real world, even if it is only through text messages and phone calls.

Hopefully, by the end of the week, I will have a better idea of what’s happening, but I’m not holding out for a miracle. Big thanks if you’re one of the few who have given me endless support, love, sympathy, bitching-fests etc etc etc. I appreciate it more than I can explain. Thanks for trying to keep things normal at the stressful and very much un-normal time. 1215f10319b3e652d7f8dfaff7aa6c73

 

 

EDAW 2017

Next week is Eating Disorders Awareness Week. I have really mixed views about it. The sheer nature of eating disorders makes people who suffer from them ultra competitive, often without realising so. You never feel “skinny enough” or “ill enough” to have the label of an eating disorder attributed to you and frequently, people like frauds for having a diagnosis under the eating disorder umbrella.

I have suffered with an eating disorder for a number of years, but only felt able to admit it within the last two or so years. From memory, I don’t think my relationship with food has ever been that good, I have always had a somewhat irrational fear of being fat because I was scared of the consequences to my health. Sitting here with a semi-rational mind, I am more than aware that under-eating and being malnourished can have just as serious, if not more so, health consequences.

The first time I spoke about my eating and “disordered thoughts”, I was in my final year of my undergraduate degree. I was already encased in the mental health system but not for anything related to eating. I told my GP how much I was struggling with food, compulsive exercise and how physically unwell I was feeling as a result. And my GP’s response make me realise how messed up our psychiatric system in the UK is.

“You’re not skinny enough”

And he was right. My BMI wasn’t low enough to warrant treatment.

Fast forward to now and I still struggle with food, eating, exercise, body image and so on. I’ve probably mentioned before that I have a wonderful GP, however the mental health system is less than wonderful and I still cannot receive treatment because I don’t have a critically low BMI. I’m just over five foot tall and there has been times when I have been classed as “underweight” but not in terms of my BMI.

It’s frustrating. An eating disorder, or any variety, is a mental illness. You cannot necessarily see it. Sure, you can see someone’s size, but that is not the only factor in an eating disorder.

A few weeks ago, it was a close friend’s 21st birthday. I had bought a new dress online, it arrived, I tried it on and it was okay. But getting ready on that Saturday afternoon and everything went so wrong. The dress rode up so I refused to wear it. I ended up trying on every single dress and skirt in my wardrobe and the meltdown that I had was immense. I’m not an angry or violent person but I was so repulsed by my own image that objects were thrown, I hit the wall, I screamed at the top of my voice that I was vile and disgusting and then I sat on the floor sobbing. The problem was, I am so used to wearing jeans and a baggy jumper and a scarf, I have learnt to hide away under the layers and that becomes my way of coping. Suddenly, I was in a situation whereby that wasn’t possible and it was terrifying. I felt vulnerable and exposed, even though I ended up wearing a knee length skater dress. My bum length dress days are definitely over.

At that moment, I vowed that I needed to lose weight and so began the latest cycle of truly hating my body and undertaking a punishing routine of effectively damaging my body.

In terms of EDAW, I think that often people of genuinely mean well when they post things on social media, regarding their experiences. In posting this, I’m no different. But I can guarantee that there will be progress pictures, of lowest weight to now and whilst I am proud of people for managing to battle through and get out of the mess that is an ED, seeing emaciated bodies isn’t helpful because it just re-enforces the feelings of not feeling skinny enough, ill enough or frail enough to have an eating disorder.

There does need to be more awareness about eating disorders. They are the most dangerous and fatal of all psychiatric illnesses. Yet people are being turned away from treatment. There’s something going really wrong there. I struggle to understand the logic of turning a person away from treatment on the grounds that their BMI isn’t low enough, when at no point would a person be turned away for treatment for a broken bone because their bone isn’t broken enough.

I don’t have the answers on how this can change. Mental health services are vastly underfunded and too many people are being failed. Too many people could have been helped through virtually non-existent early health intervention, but are being left to become more unwell because their struggles have been unvalidated and ignored. It needs to change. It really needs to change.

 

“I’m 24 and I’ve got everything to live for”

image.jpeg

 

So today I am 24 years old (or at least it’s today at the time of writing this). It’s been a tough couple of weeks and I’ve found the whole birthday thing hard to get my head around: I don’t feel like celebrating or worthy of attention/love/kindness however the rational part of me knows that I have some really really wonderful people in my life and it is okay that they care for me and want to acknowledge the day.

I think I’m probably at the age now where I need to accept that I am a proper adult. No more kidding about. I can’t go on nights out anymore and drink copious amounts, mixed with sourz shots and be okay the next day. I have rent and bills to pay. People keep asking me when I’m going the Settle Down and get married and provide my mother with grandchild. Children where I work with weren’t alive for the millennium and think that I’m old. One child went as far as asking me if freezers were around when I was a child.

But what is the reality?

I definitely don’t have my life sorted. Having children and getting married couldn’t be further from my mind. I want to pack a bag and go traveling, not be changing nappies. I have crap sleep anyway so I could do without adding a child to the mix. There’s so much pressure to confirm with society’s norms, sure I want to marry and have children but not yet. I need to sort my own shit out before I try and parent a child. And that isn’t selfish, it’s honesty.

I have no idea what I want to do with my life. At all. I had planned on returning to university and had a conditional place at the University of Oxford, to do a masters degree but for various reasons, this has fallen through. I’m annoyed but it isn’t the end of the world because I wasn’t 100% sure it was the right thing to do. I love my current job, but it isn’t a forever job. My mum likes to talk to me about life goals, I would rather talk about literally anything else.

What have I learnt in my 24 years of living?

It’s okay to not have everything sorted. I’m fine with saying that a lot of things in my life aren’t sorted, I don’t know when they will be sorted and I don’t know what I’m doing half the time. I’m a pro at bullshitting my way through situations.

Asking for help shows bravery, not weakness. No one can ever be expected to always do things alone. I can’t change a car tyre and probably never will be able to. Sometimes I’m not well enough to look after myself and whilst admitting that can be scary, it is the best thing to do. I can cope very well in the crisis when it involves other people but I am awful at dealing with my own because…well…I just don’t deal with them. On the same note, the NHS is fantastic.

I’m not always going to be right. But I do hate being wrong.

Sometimes, you just need to laugh at a situation.

Not everyone will have your best interests at heart. Some people are nasty and aren’t worth your time. That includes boys/men who use you for sex, girls who are two faced and bitchy and random people who pass judgement.

You will get your heartbroken but you will get through it.

Green eyeliner is not okay.

The internet is a blessing and a curse. I have met some of the most amazing people through the internet. I’ve also met some compete wankers.

You will learn a lot more from a book than you will from watching Eastenders/Hollyoaks/Coronation Street. Unless it’s written by Katie Price.

Death is inevitable and grieving is a slow and very personal process.

Listening to my body is not a bad thing. When it hurts I need to take note and stop pushing it to the extremes.

Exam results do not define you but your experiences in school are foundation blocks to your future.

You won’t find answers at the bottom of a wine bottle (or gin) and searching for answers there will probably end in tears and hanging your head over the toilet. But we’ve all been there.

You can’t choose family so be grateful for family members who aren’t morons.

Sometimes, the only thing to do is to chill the fuck out and remember that eventually, things will fall into place and it will be okay.

Living with: anxiety

Looking back at my childhood, I was always fairly anxious. At the time, I didn’t label it as anxiety, or anything really because it didn’t strike me as abnormal. I placed a ridiculous level of pressure on myself, even from a very young age and to a certain extent, I still do now.

When I was in year two, I made myself physically unwell because I was so overwhelmed by anxiety about SATs and not being good enough. As exams go, they weren’t terrifying in that we didn’t all have to sit down in the school hall in silence, my memories of the tests were being taken out one by one with the class teacher and doing various tests in a small room. I fell apart in my reading test and my ordinarily above average reading age came out as almost illiterate because I just could not do it. I was seven, I am now in my twenties and I can still vividly remember this.

Thankfully, I’m now past sitting exams and lead an exam free life but my self doubt, combined with high expectations does hold me back because the thought of failure or not succeeding is such a major factor in trigging anxiety. I am in the process of applying for a masters degree at university; I am over half way through the application form but have stalled because I’m too scared to submit it because I’m scared that I won’t get in and will therefore have failed. Next week, I am due to start an evening course at college and I can’t begin to describe how anxious I am about it. New people. New place. Not knowing where I will be going. Not knowing anyone. What if I can’t do it?

Over the past weeks and months, I have noticed that I have been struggling more and more with anxiety. Whilst I have always been anxious, identifying as “having an anxiety disorder” is different, because it marks a change between being anxious and managing and being anxious and it having a noticeable impact on my day-to-day life. Anxiety isn’t just hyperventilating and not being able to breathe, although that does happen.

I find anxiety really hard to explain, mainly because in my head I don’t understand it myself. The way that anxiety manifests from person to person can vary, it is rare that I start hyperventilating and more likely that I will freeze and not being able speak, which makes explaining how I feel pretty difficult. I zone out, I disassociate, I start sweating even though I feel cold, I can’t stop shaking, I feel sick, I fixate on things that are totally irrational. I convince myself that I will die or that something awful is going to happen. I obsess about hygiene and dirt and spend hours and way too much money cleaning because I’m convinced that I will get ill.

Situation 1: I get on a bus.

What if it crashes? What if I counted my money wrong and I actually don’t have the right amount? What if there aren’t any seats? What if I’ve got one the wrong bus? What if the driver isn’t really a driver and is actually going to kidnap everyone and torture us and kill us? What if there is a terrorist attack?  What if suddenly I feel unwell?

Situation 2: Someone coughs or sneezes near me or I come into contact with someone who I know is infectious.

I need to wash my hands now. I need to clean where they have been sat. Oh God, they have touched the door handle, that needs cleaning. What if I get ill? My body is crap at fighting infection. WHAT IF I DIE?! I feel sick. Oh shit, now I am ill. Where is my anti-bac? Is it rude if I use anti-bac now? Will they notice? Will they hate me? 

Situation 3: I have heartburn.

This is unpleasant. Nothing is helping. I am going to die. I am having a heart attack. I’m going to die and no-one will know. My left arm hurts. Okay, I am definitely having a heart attack. Do I need medical attention? God I hate hospitals. I’m not going to hospital. But I am dying. I feel sick. 

Situation 4: Part of my body hurts [related to Ehlers-Danlos Syndrome]

What have I done? This is new. Have I injured myself or is this just EDS pain? What if this ends up with me needing an MRI scan? What if I need surgery? I don’t want surgery again. WHAT IF I DIE?! What if there are complications during surgery? What if I’m ill post surgery? What if recovery is awful? How long will the waiting lists be? I don’t want to tell anyone for the above reasons. People are going to think I’m making it up. 

The above scenarios are ones which I have faced recently. Unpicking them and putting it down in black and white, it almost looks and sounds comical and as I was writing it, I can’t deny that I am thinking that I need to chill the fuck out and stop panicking about everything, but it isn’t as simple as that. Most of the thoughts that I jump to are completely irrational, but my fears about needing MRI scans and surgery are for logical reasons and my fears about becoming unwell are also semi logical because my immune system isn’t the best and I do become unwell very quickly. That said, I don’t need to spiral into an anxiety attack and the internal monologue of convincing myself that I will die because someone has coughed or sneezed. And I certainly don’t need to get my anti-bac out to clean the door handle in my office at work because I was freaking out about infection.

When my mind is racing with irrationality, trying to calm down or ground myself is close to impossible, often because I can’t recognise for myself that I am having an anxiety attack until afterwards. It becomes a negative cycle of thoughts, feelings and actions, which then leads to levels of anxiety of increasing.

I don’t have the answers in how to stop this, as with everything it is going to take time, work and set backs. Anxiety, like every other mental illness, is not glamorous. It isn’t a beautiful girl, crying gracefully under a spot light, with ragged breath. It is snot, sick, sweat. It is obsessing over bodily changes and fearing the worst: heart burn feels like a heart attack, pins and needles becomes the fear that you’re having a stroke and stomach ache definitely means that your appendix is about to explode and You. Will. Die. Quite often, my thought processes end up with me convincing myself that I am imminently about to die and it doesn’t matter that I haven’t died the 756830 times before when I have felt like that, because I might this time.

Anxiety: the superpower you didn’t ask for but get given anyway.

enhanced-buzz-15030-1380903679-15

 

 

Relapse, Recognise, Recover

I am a massive control freak. Anyone who knows me in real life will be able to confirm that. That combined with being a perfectionist, but being a perfectionist to the extent that I don’t feel like I’m perfect enough to be a perfectionist, is ugly.

A few days ago, I returned back to England after a short break in Denmark with my mum. I’ve wanted to go to Denmark (specifically Copenhagen) for years and I wasn’t disappointed. It is such a beautiful city and Danish people are lovely. Denmark is quite an important country with regards to my own family history so actually being able to see things which have been talked about so often was great. I was determined to enjoy it.

 

The only thing that threatened to get in the way of my enjoyment of Denmark was my health, both physical and mental. I learnt a hard lesson last year, when I went to Portugal, that mental illnesses don’t take a break when you’re on holiday. So in that respect, I was more prepared and knew that I couldn’t expect myself to feel 100% a-okay. But I was naive in thinking that being on holiday would mean that suddenly all my eating disorder behaviours would vanish and there wouldn’t be any issues with food.

I wanted that, so surely that would be enough? If only. I really struggled. Part of that struggle was down to my control freak streak. I find ordering food of an unknown menu impossibly hard and stressful. Obviously I then had to sit back and wait for someone else to cook the food for me, without me being involved. Well dur, you’re probably thinking, that is what normally happens in restaurants. I don’t have a background in psychology but I’ve been in The System long enough and know enough people to suspect that my eating difficulties are a way of exerting control when I feel so out of control in other aspects of my life. And I’m not too sure what to do about that because as I found out, it isn’t as simple as wanting recovery enough to be able to succeed. Yes, of course I want to recover, get better etc etc etc but I’m so stuck in this messed up rut.

I tried.

But it’s not just a case of mind over matter. You can’t just forget the rules and fears you have surrounding food and to suddenly be able to totally go against the lists of safe and non-safe foods.

I miss being able to enjoy food. I miss being able to look through a menu and to be able to look forward to trying new foods and not be automatically trying to work out calorie content.

Now that I’m home, I’m left with feelings of angry towards myself for not being able to get a grip and just eat a fucking meal like a normal person, without sky high levels of anxiety. Yet again, a holiday has been defined by mental illness. I’m left with the post-holiday feeling of overindulgence.

I’m not going to pin my hopes on being 110% cured by summer 2017, but I recognise that feeling like this is miserable. No one can change things except me. Here goes.

 

 

Skye Has No Limit

I’ve spoken on numerous occasions about Blue Skye Thinking, a charity set up in memory of Skye Hall, who was diagnosed with a brain tumour ahed five and sadly passed away less than a year later from radio-chemo neurotoxicity. The aim of Blue Skye Thinking is to support the research and treatment of childhood brain tumours and ultimately, to give children like Skye a better chance of survival. It is also a way of ensuring that Skye and his courage is remembered; he truly was an amazing little boy.

Having got to know Skye’s family pretty well, I have become more and more passionate about raising as much money as possible for the charity. I recently promised Sally (Skye’s mum) that I wouldn’t ever stop talking about Skye or Blue Skye Thinking. The latest appeal for Blue Skye Thinking was launched a couple of weeks ago. Aim Skye High is encouraging people to come up with wacky and crazy fundraising ideas, with the goal of raising £50,000. The more wacky the better, because wacky = publicity and that is crucial in continuing with the fundamental targets of Blue Skye Thinking.

My previous fundraising efforts have seen me abseiling down the Spinnaker Tower and having eight inches of hair cut off to be made into a wig, by the Little Princess Trust, to help a child who has lost their hair through illness. People who know me won’t ever let me forget who emotionally traumatising I found having my hair cut off, the only thing that prevented a full on meltdown was knowing that my hair would be helping a poorly child and in reality, they needed my hair a lot more than I did.

LauraHair
charity haircut for Blue Skye Thinking and Little Princess Trust

 

So when I told Gill (hairdresser, general hero and gossip queen) that I have come up with my latest fundraising idea, I can forgive her for looking somewhat terrified. I quickly reassured her that my hair would be remaining on my head and that this idea is less traumatic for all involved.

The 5th November would be Skye’s 8th birthday and for a while, I have wanted to do something to mark this. When the Aim Skye High appeal was launched, things slowly fell into place and my latest idea came about.

To mark Skye’s 8th birthday, I will be swimming 8 kilometres, to raise money for Blue Skye Thinking. The actual time/date/location are yet to be confirmed and whilst emotionally, this isn’t such a huge challenge, my various health conditions will mean that this is going to be bloody hard work. I’m not entirely sure how well my body will cope…or if it will cope. I’m training hard and can comfortably swim 2km but I still have a long way to go.

Am I scared? Yes. Very.

However, Skye fought so damn hard against the biggest cancer killer in children so, if I can share even a tiny bit of that strength then I know that I can do this.

This is where I start begging, because I can’t do this without you. The money won’t be helping me but it will be helping children like Skye and families like the Hall family and the other families who are currently going through hell.

If you would like to donate, you can do so here or via Just Giving text, by texting LCBS48 £2 to 70070 to donate £2 (or enter whatever amount you wish). Every little helps and it will make a huge difference to the children diagnosed with brain tumours, as well as their families. Give a child a better chance of survival and continuing with their childhood, please.

If you’re unable to donate with dollar, I’m hoping to have a little cheer squad and your cheers might be the one thing that stops me from drowning.

As always Skye, this one is for you.

8e88881f-1811-479e-af33-754d212ad163