If you’ve been following my blog for a while, or if you’ve been here since the beginning, you’ll know that pacing (for many years) was like a swear word to me. The doctors threw it around a lot, really pressed the importance of it, but no-one really explained how to implement it properly into my life. I felt like I was being told to sit down and accept my fate of not being able to do anything, anymore. As someone who likes to be busy, I didn’t accept this instruction.
Don’t misunderstand me, I tried. I’d manage a few days of what I viewed as pacing and then I’d slip back into my old habits, trying to live a normal life of activity with no adjustments. The consequences of doing this was that I hit that ’empty spoon’ wall hard and often. Each time regretting it as I then took days to recuperate.
I’m currently coming towards the end of the 3 diplomas I’ve been studying, in Health, Wellness and Life Coaching – specialising in life management with chronic illnesses. I’ve loved the course itself but seeing the difference applying it to my daily life has had, has been amazing. It’s completely changed my understanding of pacing and therefore helped me to apply it to my life with ease.
Yesterday, for example, I was feeling much better than usual so I asked my son what activities he would like to do. I had already decided I would say yes to whatever he chose to do and would find a way to adapt it if needed. He asked to cook with me. So we got the soup maker out to eliminate the amount of cutting and hot heavy lifting of pans. He loved peeling the onion and garlic, cutting out the amount of herbs. It was a gentle session, sat down and full of laughter. I know energy filled days won’t always be here even when I’m 100% on track, but by pacing, asking for help more etc.it reduces how often flare ups will happen. It’s making a huge difference not just to how I’m coping physically but also to my mental health which has had a real boost.
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.
Yesterday I threw a fund raising tea party to raise awareness and funds for The Dystonia Society. The day exceed my expectations by miles, which was fantastic! More people than I had anticipated turned up which was amazing and really added to the day! Our house was constantly filled with people drinking tea and eating a variety of cake!
What amazed me the most was how generous people were with their donations, it was really very touching! Lots of people read through the leaflets that the Dystonia Society had provided us with and asked me a lot of questions, this was fantastic as I felt that everyone there was really interested to learn more about Dystonia.
At one point in the afternoon I was shaking my sisters friends hand goodbye when my hand suddenly spasmed. I was slightly embarrassed as I was unable to let go of his hand and the spasm was just getting tighter, luckily he found it rather amusing and said it was fine and wiggled his fingers out of the spasms grasp. This provided great entertainment for everyone in the room and also showed them a glimpse of just what my little Dystonia alien could do.
By the end of the tea party I was completely and utterly exhausted, but over the moon by how much we had managed to raise! So far a grand total of £577.26 has been raised which is mind-blowing!!! Dystonia awareness week has only just begun though and my hair shall be staying blue for the week as part of the Go Blue Movement to raise awareness and funds for Dystonia. So if you would like to help me raise even more money for The Dystonia Society please visit my Just giving page http://www.justgiving.com/Rebecca-Moller1 .
Here are a couple of pictures from yesterdays fantastic tea party!
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