Tag: alternative therapies

Posted in Archive, January 2021

Lockdown, Homeschooling and Work

Posted on by dystoniaandme

With the introduction of the new lockdown I had had been planning on getting crafty with the kids again. That idea was snuffed out after an email landed in my email box confirming that nursery would be doing live home lessons followed by tasks to be completed, photographed and emailed to his teachers. All well and good except my partner works shifts and I have an 18 month old whose favourite word is no, also takes no as a yes and will most deffinently try to touch every key on my laptop.

So today was the first home school lesson. After half an hour of technical wrestleling we finally got on to Teams and were met by a chorus of STEFAN. The children were happily mucking around with each other, my daughter was desperately trying to join in and the teacher? Her laptop had the same issues mine had to start with and never made it to the lesson. Round two tomorrow!

Dystonia and Me Holistic Health Coaching is officially up and running which has added a lovely touch to my evenings. I have been thoroughly enjoying chatting with different people with a range of issues and starting them on their journeys with me.

Colourful heart enlarging in further colours being touched by a human figure in blues and purples

I would love to hear if any has had the vaccine yet? From the calculator I predict mine to be late Feb to March at the current injection rates and would be interested to hear your experience in the comments. I personally will be accepting the offer of the jab, I just would like to go in to it eyes open to side effects.

Posted in Archive, May 2014

Alternative Coping Methods

Posted on by dystoniaandme

Today is the last day of Dystonia Awareness weeks, which is most likely a relief to all the lovely people who are signed up to receive email alerts when I post a new blog as I’ll be going back to posting a couple of times a week. It has been amazing seeing how many people have joined in with Dystonia Awareness week, Thunderclap was seen by over 6 million people which is incredible!

In many of my blog posts this week I have mentioned treatments such as Botox injections, muscle relaxants and Deep Brain Stimulation, however none of these treatments can guarantee relief and are not always accessible, so I wanted to discuss some alternative ways of coping with symptoms. Heat is great for relieving muscular aches and pains that can result from spasms, wheat packs, back wraps and microwaveable slippers are all great products and I use at least one of these three several times a week. TENS machines are also great, I don’t know what I’d do without these. I never go anywhere without one in my handbag and towards my Botox dates they often help keep my neck spasms bearable.

If you can afford alternative therapies I would highly recommend trying Reflexology. I found before having regular treatments that I could not sleep well at night as the spasms would keep me up. This turned into a vicious cycle as I was then too tired to handle my spasms well in the day. Now I find having regular Reflexology treatments enables me to have several good nights of sleep a week which does me the world of good as it means I can handle whatever my body throws at me in the day better. I also find burning scented candles or essential oils helps me relax (and after putting them out) get to sleep easier.

Everyone finds something different that will help them, for some people touching certain pressure points will relieve spasms to a certain extent, in others hot or cold therapy does. For me as I mentioned above heat, TENS and Reflexology are what keeps me ticking along in between Botox appointments. Its worth experimenting and trying to work out if anything particular helps you.

Posted in Archive, May 2013

Dystonia Alien Gets Creative

Posted on by dystoniaandme

My Dystonia alien seems to have come up with yet another inventive spasm for me. Now my head and neck rather violently jerk to the left whilst my mouth opens and closes making a sort of popping noise. It’s rather painful and leaves me feeling like I have pulled the majority of the muscles involved.  The spasm happens all day, sometimes l go a few hours without it and then it will start all over again, I have noticed that when I get tired in the evening this spasm happens far more often.

My mum emailed my consultant for me last night, updating him and asking him if they were any closer to knowing when I would be admitted for a week. However it normally takes a fair period of time for him to get back to us, so I am not expecting to hear from him any time soon. I spoke to my GP this morning, asking him if there was anything he could suggest I do as I am in a fair amount of pain and getting to sleep and staying asleep is becoming almost impossible. At first he tried to persuade me to try the Clonzepam again, but as it turned me psychotic the last time and had me wanting to cut my hair off I told him I would not go back on it. So he has decided that I am to up my Tramadol, which is a pain blocker, to two pills in the morning and one pill in the evening until the pain side of things settles down, then I shall go down to one pill in the morning and one pill in the evening. I am also to go back on to a medication called Baclofen which is a muscle relaxant. I had been on this previously but my consultant took me off it as at the time it was not helping me, it made me forgetful and I was on a very high dose. My GPs thinking is that because so much more of me is affected by the Dystonia than previously the Baclofen may help, if it does help then I am to increase the dose.

I am really hoping all the medication does help, I feel like I have fought against Dystonia for a fair while now without a lot of help from the medical society, and a bit of help in this endless battle would be greatly appreciated. I have not been able to get to sleep easily lately and I am waking up often in the night due to spasms. Lack of sleep is beginning to add up and being rather tired in the day makes fighting against my Dystonia alien that little bit harder.

I am a big believer that when you suffer from any sort of illness you should always explore alternative therapies to see if you can get any relief from them as taking lots of pills (like I currently am) is not good for you. When I was little I suffered from Chronic Fatigue Syndrome and had reflexology for a period of time to help. It certainly relaxed me and I always had a great nights sleep afterwards. With that memory in mind I have found a reflexologist who comes to your house and is not too expensive. I have no idea if it will help me at all but my theory is this, when you have Dystonia you are advised to avoid stress and to try to stay relaxed, therefore having reflexology done, which is a relaxing/calming experience, should provide some sort of help, even if it is just having a great nights sleep afterwards. I am having my first session next Monday and I am really looking forward to it.

I am hoping that with a combination of medication and reflexology I should be able to feel ‘better’ in myself  and have more energy to fight Dystonia with!