Posted in may 2021

Looking forward

Recently I’ve been on a bit of a rollercoaster of emotions. Hence why I didn’t automatically return to blogging following my son’s operation in March. I wasn’t sure where my head was at and needed to work through it. A handful of events had triggered it and I was up and down more than the seesaw at the park.

I’d had an assessment where I need to provide extreme detail of all my conditions right from the start to now. You can imagine how emotionally exhausting that can be, explaining to someone why you had to give up your dream midwifery degree, relieving the rapid decline in health over the years and what I do to cope. I hadn’t anticipated it to affect me so strongly but it did.

It’s taken awhile but my head’s back where it’s stronger. I think during these covid times where we don’t have our usual coping mechanisms it’s quite easy to feel sucked under. Previously I could have rung up my friends and been at the soft play laughing over a fruit shoot, while the kids ran themselves to sleep. Spirits lifted, dark cloud averted.

Im looking forward now, and focusing on the future. On the post lockdown adventures with my family, with having friends in for a brew and a natter. But also accepting that lockdown has taught me that I don’t need to be on the go and out every day. If my body’s saying no then PJ’s, Disney and baking is it. That’s perfect too.

What are you looking forward to?

Posted in Archive, Novemeber 2020

Family Planning When Chronically Ill

Damon and I had always said right from the start of our relationship that we envisaged having three children. We both came from fairly large families, with him being the eldest of three, and myself the eldest of four children, so it seemed natural for us to imagine plenty of tiny feet running around creating havoc in the way only kids can. As my conditions were fairly well controlled when we met, the only issue with our forward planning was the fact that I had been told many years before at the age of 19, that I had severe endometriosis; to the point that they suspect I would be unable to conceive naturally and would need medical assistance to do so.

Common symptoms of Endometriosis

We have been fortunate to have been able to have our son Stefan Elijah, now three, and our daughter Evie Maise, now 18 months, without any assistance. Their existence to me feels miraculous. When we fell pregnant with Evie we discussed frequently trying for our third child shortly after her first birthday. It was exciting, and something I was really quiet fixated on. Physically I had managed to get back to a good place after having Stefan, and it seemed wise to do it close together, before my health started to go downhill. My pregnancy with Evie was a rough one however, and I spent multiple periods as an inpatient in my local hospital. We had hoped that after Evie’s arrival that my body would improve again as it had following Stefan. However, this time round it took months to get back in to the Botox system and once again I ended up in the hospital for over a week needed an NJ, constant fluids, unable to swallow, or really communicate. With each day the idea of a third was slipping further away, I refused to talk about it for awhile. It really affected my mental health.

While I have had periods of better health over the last 18 months, it has generally been a downhill, to the point where I’m now essentially blind in one eye, reliant on an electric wheelchair outside of the house, and being assessed for demyelinating diseases on top of everything else I already had going on. My hands are full to say the least. So Damon and I sat down and agreed that it would be unfair to even consider bringing a third child into the family; he was also concerned if my heart could physically take a third pregnancy as it has struggled with the last two. It was an extremely hard conversation to had. Even though we both knew it be the right choice to make, it didn’t make the biological want for another child any less.

Stefan aged 3
Evie 18 months

I often get asked a mix of questions in relation to children. Sometimes people will ask “So when do you think the next one will come along?” It’s a well meaning question, that I always answer with a light hearted “oh my hands are full enough with two”, but it stirs the emotions, the want for another that is so strong since our daughter started to so much more independent. Other times it’s the slightly harsher “How you can even consider having biological children when you know some of your conditions are genetic?” Generally I don’t answer this question in public, mainly because it catches me of my guard. However it is fair. My Ehlers-Danlos Syndrome has around a 50% inheritance rate, its slightly more prevelant in girls than boys. Yet there is every chance that both children have escaped without developing it, there is also a chance that if they do have the condition that it’s not as severe as mine. There is no way to know. It’s also worth bareing in mind that mine is made worse due to other conditions that impact each other. I would say that before you ask anyone about kids really think; if they have a medical condition perhaps stay away from the topic until they bring it up. In can be a sensitive one.

Posted in Archive, June 2016

Hospital Investigations

Since I last blogged things have been hectic. I have spent the majority of my days either at the hospital having various investigations carried out, or on the phone to them chasing down followup appointments. This week I have had more bloods taken and an MRI of my brain, eyes and spine with contrast performed. Tuesdays MRI experience seemed a bit surreal. It took 35 minutes, three medical personnel and 7 attempts before I was successfully cannulated as my veins were up to their usual disappearing act. This time allowed for me to internally become quiet anxious at the thought of being in the MRI machine for a minimum  of an hour – in the end it was about one hour twenty. I am generally not a claustrophobic person, but this machine brings that fear out in me, this is most likely exacerbated by the fact that I have to be strapped to the table to ensure my spasms cannot move me around to much and distort the images.

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Taken just after escaping the MRI machine

My stress levels have been through the roof this last week. I have fought so hard over the last four years to be put on a medication regime that allows me to have more control over my body again, and live a relatively normal life. The mere thought that my body may become more of an issue again is distressing. However I am lucky that I have a good support system in place, my family help keep me distracted, my boyfriend is great at talking through my concerns with me, and my councilor has been a fantastic space for me to vent and explore my frustrations at my faulty body.

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Relaxing in Costa after a long day of tests at the hospital

I get the results of my MRI on Monday. So I shall know then whether more investigations need to be carried out or if it is MS.

Posted in Archive, May 2015

Support System

Living with chronic illness is never easy. It impacts the majority, if not all, areas of your life. One of these areas is relationships. Whether this is friendships, family, or romantic relationships, chronic illnesses such as Dystonia can have a big impact. It is hard enough for the sufferer to understand what they are dealing with and cope with it, but for people who are not experiencing it themselves it really sums up their characters by how they react.

Personally I think it takes a lot of guts for a sufferer to open to their friends and family and admit that they have been diagnosed with Dystonia. It is not the easiest condition to explain. There is no rash or broken bone that they can see, no medicine that is going to cure you. You are sitting them down and admitting that you are not going to get better, that you may in fact get worse, but that you are hoping that a handful of medication and injections will help control the condition. People will either stand by you or they will turn their back on you.

I can remember when I first announced to those closest to me that I had finally been diagnosed. I was naïve enough to trust that my support system would stay intact. I never expected it to crumble around me. My relationship of two years broke down instantly, and many friends vanished into thin air. At the time I was lost, unable to comprehend how those I had thought would stand with me through thick and thin could just disappear the minute the going got tough. With time though I grow thankful that they did leave, it meant that I was left with a support system I could count on whenever I needed it.

When you live with Dystonia I think having a support system in place is one of the most vital things in enabling you to get by. Emotionally it means I know that I have friends I can count on to listen whenever I am having a bad day and am not sure how to cope anymore. Physically, I can be reassured that whenever I am functionally paralysed for example I know there are people I can rely on to help me. I know of some sufferers whose own family turned their back on them because they simply do not comprehend the condition well enough, I am blessed to have family and friends who are here for me 24/7.

Dystonia can be alienating, in life you do not often meet people with the condition. Surrounding yourself with people who love you despite having a brain that likes to be dysfunctional is important.

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!