When I was 17 weeks pregnant with my daughter I underwent surgery to remove a mole on the underneath of my right breast that had early cell changes. Due to the fact I was pregnant and it was a relatively short surgery they didn’t want to give me a general anaesthetic, so decided a local would do. Unfortunately my Ehlers-Danlos means I have no response to local anaesthetic and felt every cut, and every stitch. The whole process was rather traumatic and I’ve worked hard at trying to forget it.
I was admitted to my local hospital a couple of days ago due to worsening symptoms in my eye and leg. Due to this it was decided last night to bring my lumbar puncture forward to that evening. I explained that local anaesthetic does not work in the slightest for me. They decided to give me a double dose in the hope it would work; it didn’t, which I expected, maxfax team has tried injecting several times this amount with no effect previously. Now lumbar punctures are known to be painful anyway, so to know I was having one without effective pain relief was nerve wracking to say the least.
It was one of the most agonising experiences I have ever had. It took multiple attempts to place the needle correctly as they found the spaces inbetween the spinal collum to be be extremely narrow. It’s been just over twenty four hours since and I’ve struggled to move. My whole back is in horrondous pain, taking a deep breath or swallowing liquids really seems to agreviate it. I’ve also lost sensation over my waterworks which is concerning. I’ve spoken to the consultant but everyone’s answer over this is that I need an MRI, which apparently is booked but no can tell me a day or time.
I’m missing my kids loads but I know that being here is where I need to be. If this helps put a piece of the medical jigsaw in place and leads to better management that can only be a good thing. Just got to take everything one moment at a time.
What can I do for you today? It’s the standard greeting I find I’m met with at every doctors appointment, no matter the speciality. Perfectly poliet, open ended so therefore inviting me to dive in to the promblem that has brought me to their office. Expcept lately that is not how that questions makes me feel, it leaves me biting my sarcastic answer off of my tongue. Fix me, take my pain away, how about just stop my constant deterioation please and i’ll make do as I am but please press pause in the meantime. Let me correct myself, it’s not sarcasm, it’s truth, it’s honest words from a scared vulnerable person who wont utter them because I know the reality is the Drs are trying but their isn’t much they can do.
I was diagnosed yesterday with Trigeminal Neuragia, along with being informed they no longer expect the sight I’ve lost (the majority of it) in my left eye to return; I can see blurry outlines but I cannot work out shapes or distance. It was a bit of a hit emotionally as whenever I have had Optic neuritis before my sight has recovered fairly well, however this has been going on for a while now and if anything the pain has gotten worse behind my eye, it is incredibly intense. I’m trying not to dwell on this too much while we await my Evoked Potential results and wait for a date for my lumbar puncture test. Hopefully these tests will shed some light as to what is going on currently.
In the mean time I feel much like this blog; I am all over the place, one minute quite happy dealing with things as they come, the next frustrated that despite almost a decade of chronic illness a level of normality is yet to be reached. I’m still fighting against the current of deteriation. It may be as useless as trying to swim the wrong way around wild rapids but it helps to know that I am trying to do something to counter the every growing pill box.
Independence has been a big issue for me ever since Dystonia hit me. I went from living at uni and being very independent to moving back into my family home and relying on my family to do everything for me. Simple things like just going to get a drink or going to talk to a member of my family in the other room became impossible tasks. To get around my house I relied on my parents to put me in a wheelchair and wheel me round. I often found and sometimes still do, that I push myself too far in my attempts to do things for myself and end up causing more spasms, however this never bothered me as I still get that sense of achievement by accomplishing the task.
In the beginning simple things like that fact I could dress myself and do my own hair and makeup were enough for me, as even though they were hard I managed to do them without any help. Sometimes this meant it took hours but I loved it. Over the months though my desire for more independance built up. I managed to fulfill this desire once a week by riding, where I was in complete control of both body and horse.
Recently though I have been trying to explore ways where I could expand my independance without risking setting off more spasms. At first I was drawing blanks, then it hit me! I could bum shuffle! For those of you who are unfamiliar with bum shuffling it is when you sit on the floor and move using your legs and hips to pull you along, it takes awhile but it gets the job done.
This simple technique has left me thrilled. There are still moments where I need to be in a wheelchair as my spasms are bad and I am simply not well enough to do it, but the majority of the time I am able to. Things like going into the living to watch TV with my family or have a gossip are now so much easier.
Last year I felt like it was the end on the world and that Dystonia was consuming every aspect of my life. Now I am an empowered determined fighter, craftly finding ways to get around the Dystonia. One day I shall be completely free!
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