Christmas card – Dystonia and Me

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.

There is currently an advert on the T.V (I can’t remember which one it is, it looks like a Christmas one) that has a line in it that I love, ‘Take the good with the bad’. This is so true, everyone goes through good and bad experiences in life, and at the end of the day, it is up to them what they choose to take from that experience.

Dystonia is not what I would call a good experience, to be rather honest it sucks and I would rather not have it, however this does not mean that I won’t take something positive from the experience. For example, because of Dystonia I did a charity run and raised £715 for the Dystonia society. Instead of focusing on all the negatives that Dystonia causes, I make myself think about the positives, such as I managed to wrap all the Christmas presents I had brought one-handed and they looked better than normal, I even wrote my Christmas cards with my left hand!

I understand that sometimes it can be hard to focus on the positives when you are in the midst of a bad time. However I think that forcing yourself to focus on the positives is the best thing you can do, it gives you a distraction from the negative. There is no point in sitting around wallowing, when you can be thinking of the positives; such as your personal achievements, and trying to figure out how you can make something good out of the experience.

dystonia and me

dystoniaandme

I'm 32 years old, a mother, author, partner, and spoonie. I live alongside Dystonia, POTS, EDS, Osteoarthritis, and a dictionary worth of other diagnoses. This little blog has been set up to help spread awareness and bring light to these conditions and connect warriors with others who can understand each other's experiences.

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