Posted in Archive, February 2020, march 2022, november

Baseline Pain

The start of last week I found myself stood in front of the walk-ins reception desk, politely frustrated. The receptionist, with her raised in exasperation eyebrows, questioning loudly my reason for being there. Yes it did sound ridiculous. Who attends a hospital for a dislocated jaw, then loses consciousness while inhaling penthrox and comes too no longer on the a&e trolley but face first on the floor with two nurses helping your brain fogged self back to bed; before swiftly relocating you and discharging you despite protests of I think I’m hurt. Then presents at the unit 3 days later complaining of pain. I get it I sound mad. In one final attempt to be taken seriously I lift my top up, lowering the left side of leggings and underwear, revealing the deep purple bruising that consumes the left side of my body.

I feel embarrassed and humiliated. To have had to expose my body in a packed waiting room so as to be taken seriously is maddening. However this is isn’t the first time and it won’t be the last. In that same visit I was criticized by drs and told my pain threshold must be low as my walking wasn’t bad enough for serious damage He soon ate those words. People forget that I live every day in pain, this happens even in situations like this where we’ve just discussed my conditions and the professional has glossed over my issues rather than accepting my offer to explain further. I wake up and relocate the joints that came out over night every morning. My baseline of daily pain is that of most healthy person’s A& E trip level.

Between my hip/leg damage, general nerve damage and nerve flare from my Botox I’m doing my best to pace and get through the day slowly. It’s tiring but worth it. So much awareness is still needed in this world.

Posted in Archive, Novemeber 2020

Vulnerability is Strength

It’s a painsomnia night so I thought I would share with you all something that I’ve been coming back to frequently recently. Personally I’m a very sensitive, emotional person; now some may view that as a bad thing, others a good thing, some of you will be neutral. I can see the pros and cons, but it’s what makes me me, so yes I may cry buckets everytime we watch certain episodes of Vikings, or The Lion King but i’ll also laugh myself to stitches five minutes later. It’s a rollercoaster of life. It’s real, honest and truth.

So why do I, and I know many others with chronic illness will be able to identify with this, go on autopilot everytime a doctor, family member or friend asks after us? You know the drill, you walk into the drs room the doctor greets you and asks how you are before you get down to the nitty gritty. It’s a formality, so like a healthy person you respond with I’m good thanks, and you? It’s ridiculous! Why is it so hard to say you know what I’m actually not great at the moment and I need some help.

I forced myself to do this yesterday. I could hear the usual auto response slipping out my mouth, so I caught myself, took a breath, looked the doctor in the eye and said I’m pretty awful and I don’t know what to do. Now saying that wasn’t easy but boy did the relief for sharing the burden feel good. Making that choice to let the facade of I can cope with everything slip for a moment to ask for help took an incredible amount of inner strength and it’s something I’m going to practice doing more often. Vulnerability is not something to view in a negative light, in fact it allows others to reach out and see if they can improve your situation. Sometimes just talking things over can make a difference.

So just pause for a moment and think; are you like me and guilty of putting walls up? Is it worth flexing your inner strength and letting that vulnerability show? Let me know what you decide to do!

Posted in Archive, February 2020

Rare Disease Day 2020

When I met my partner Damon back in 2016 I was upfront about the fact that I had a whole host of chronic conditions some of which would deteriorate as I aged. It was a subject that I broached on our first date, romantic I know, but it was important to me that he knew life with me would not be an easy one; our first date lasted five hours. What was meant to be coffee, turned into a museum trip, and hours spent talking on a bench overlooking the River Cherwell. At the time my Dystonia was my most limiting condition. The EDS was annoying and had its fair share of debilitating moments but in comparison was easy enough to deal with.

However over the years with a good combination of medication and very regular Botox injections my Dystonia is often far more controlled, yet my EDS has spiralled dramatically so. My jaw which takes the brunt of both conditions is in need of replacement yet both conditions make replacement not necessarily the easiest call for my surgical team; it’s an ongoing argument. My knees are in a similar state. They too need replaced. They currently sublex at 0 and 30 degrees constantly yet bracing doesn’t seem to work due to the change in position with each time the knees come out of place. I frequently joke that I’m falling apart and honestly it feels that way.

The latest part of me to be affected is my hearing. My hearing tests have showed that im hearing impaired and im awaiting further appointments on the next steps to see what aids will help me. Whilst my hearing being affected isn’t overly surprising, it wasn’t something at 27 I expected to be told. However after almost a year of struggling I knew it was time to give in and get some help.

If you look at me you could be forgiven for not realising anything was wrong. Which is one of the reasons Rare Disease Day is so important. Disabilities come in all variations and I for one never look the same one day to the next.

I always say no hospital untill I’m unconcious.
Posted in Archive, February 2020

An Anxious But Honest Return

This morning I was on the phone to my mum when she brought up the fact I hadn’t blogged in a long time. I am rather good at finding excuses for why; too tired, too busy with the kids, don’t know what to say. But none of those are completely true. So bless her, I rambled for quite a while as to the reasons why.

Firstly Ableism. Honestly I’m mad for allowing myself to be beat down enough to feel I didn’t deserve a voice as an activist for people with Dystonia and other invisible illnesses anymore. Up until the last several months I had been having a relatively stable patch which I had been making the most of, and for that simple reason I felt I wasn’t ‘sick’ enough to do this anymore. Which is frankly ridiculous. I have several conditions all of which are chronic, a couple that will continue to deteriorate as I age. My good spells generally never last longer than a Botox cycle, yet because I don’t fit into a nice stereotypical tick box of what disability should look like I felt like I couldn’t blog. I expect myself to be able to do everything that a healthy person can do, because that it is what people, I feel, expect of me from many not so subtle comments for example lose weight your joints won’t hurt as much.

Secondly, was my depression and anxiety. The anxiety and paranoia I experience partially stem from post natal depression but are largely side effects of my medication. I feared hugely that holding my hands up and saying ‘Hey, I’m trying my best but I’m struggling like crazy, I’m terrified by the deterioration I am currently experiencing in my body and I don’t know to do’ that my doctor’s would somehow read this and decide to withdraw the medication that is so vital to me and pack me off for yet more counciling. That may seem ridiculously paranoid to read but when you’ve lived years of doctors gaslighting you, undermining your very real physical symptoms, skirting around the subject of mental health is now habit (though I am on antidepressants now).

I hope that clears things up. I want to blog here more. It helps to write it down and connect with others in the same situation.


So here’s a very late Happy New Year.

Posted in Archive, February 2015

Disabled Dating; A Taboo?

Back in 2012 when I first became ill I was in a long-term happy relationship, however my partner at the time did not deal at all well with my disability. He soon ended our relationship. At the time I had not given a moment’s thought to the difference between dating when you’re able-bodied and dating when you’re disabled. The reason for this is because to me I have always believed that it is who you are on the inside that counts, to me it does not matter if you have one leg or six!

My views however are that of a minority of people’s it would seem. Whilst people are happy to get to know you, anything beyond friendship would seem to be forbidden. To many it is just too embarrassing to be romantically linked to someone disabled, simply because we differ from the norm. This idea, to me, was reinforced when several months ago I was approached by the TV programme The Undateables, to see if I would be willing to take part in their show or if I knew anyone else disabled who would. At the time I turned down their offer appalled that I was considered undateable simply because I am disabled. However now I sit here considering whether I was wrong to turn them down so quickly. Isn’t hindsight a wonderful thing? After all I have been single for two years now.

An able-bodied person is much more able to go out and socialize and meet new people whether that’s at a club, restaurant, coffee-house etc. They have much more freedom and accessibility to choose to do this. I would love to meet new people. However take for example the fact that  I have no control, currently, over my left arm, I could hardly go to costa and have to apologise every few moments for hitting someone! I know some of you may think Online Dating to be the perfect solution. For some people I won’t deny this may be a fantastic idea but not for me, as it doesn’t take away the above issues which often can put people off when you inevitably meet. I want potential partners to get to know my personality and learn to dodge to my spasming limbs at the same time.

Society’s view on disabled dating is a hideous one. If two disabled people date, or marry, they tend to be rather harshly judged. You often hear and read comments on how they are unable to care for each other, or if they choose to have children that the child’s needs will be neglected as the parents will be unable to care for him/her. These views that are often voiced loudly and publicly are completely ignorant. The owners of these opinions in nearly all cases have never met the people involved so cannot make these judgements.

Able-bodied/disabled couples are also criticised. When out in public a lot of people will presume that the able-bodied partner is a nurse/carer/sibling. They rarely come to their own conclusion of the actually reality of partner/date. Again these relationships come under fire, especially online where people state that they should not get together as the able-bodied person will just end up being a carer. These opinions have been voiced with what I expect to be no insight.

I’d like to question these people who claim us disabled people cannot date either able-bodied or disabled persons. I want them to imagine they became ill and could not be cured. What would they say then?

Naturally I defy these naysayers.  I believe that I’ll get my fairytale ending, just with a few more spasms, falls and laughs than originally expected!