Tag: reflexology

Posted in Archive, September 2013

Basking in Positivity

Posted on by dystoniaandme

The last few days have been truly fabulous! I got into college to study a Level 3 diploma in reflexology, had a meeting with the learning support team who were completely wonderful about my Dystonia, and today I have been out for lunch with two of my best friends who I had lived with at uni.

My course starts in just under two weeks, and at first will be only be for 3 hours one evening a week and then progressing to each saturday as well when we start working on clients. It is nice to have found something I can be passionate about and to study towards. Being able to study Reflexology is also rather reassuring as I can go on to work from home. I have spent months thinking I would never have a carer, but since taking the antibiotics which have calmed down my Lyme symptoms, I feel empowered and full of hope.

I was thrilled to go out to lunch with my friends this afternoon. Having lived with them at uni, I miss them a lot. I got a taxi up with one of them to the Beefeater, which was a good experience. Normally my mother or a family friend takes me if I’m going  out somewhere, so it has given me confidence knowing that I am able use a taxi service with ease. I felt like a ‘normal’ person and did not feel extremely conscious  like I normally do when in a restaurant.

Having everything go right the last few weeks and has been amazing, I have not had to fight to get what I’m after, which has been a nice change. I feel extremely relaxed. My little Dystonia alien is by no means letting me forget he is there, but I’m giving him no attention and basking in the positivity that is filling my life currently.

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Posted in Archive, August 2013

Tremor and The Fantastic Effects of Reflexology

Posted on by dystoniaandme

Today my jaw tremor has returned, I’m not too pleased about this as it is earlier than I expected it to be, however I am having my Botox injections next Tuesday so it’s only one week of putting up with it. I do look rather silly as I have a baby teething dummy in my mouth to protect my teeth so that the tremor does not loosen any more of them.

I have had weekly reflexology sessions for a few months now and I cannot get over just how much of a positive effect it has on my body. My feet like to spasm in the evening and the pain in my knee and hip joints get bad, this normally means I will be lucky to get more than four hours sleep. However with reflexology I have found that I get between three and four fantastic nights of sleep, which makes a big positive impact on my energy levels during the day which enables me to handle my spasms better.

I tend to have my reflexology sessions on a monday afternoon. The night before the session my sleep is almost non-existent, I’ll spend the night strapped up to my TENS Machine, doing my meditation breathing exercises etc in an attempt to get to sleep. I have even started using rescue remedy night drops which have helped a bit. To go from almost no sleep to the next night sleeping dead to the world is the most amazing experience. If I could afford to have reflexology several times a week I would not think twice about doing so.

I rely on medication to try to suppress and manage my Dystonia. Whilst these medications are essential I would much rather not take them as it’s not good for your kidneys and your liver to be constantly bombarded with them. Therefore having an alternative to help me sleep and deal with my symptoms is such a giant relief as I was very reluctant to go back on to my sleeping medications. When you have Dystonia you are told to try to avoid stress as it can exacerbate your symptoms, now obviously it’s near impossible to lead a stress free life as Dystonia itself is rather stressful. Reflexology is so far my biggest stress reliever, I honestly do not know how I would cope without it.

I saw this quote earlier and fell in love with it, I find it rings very true.

 

Posted in Archive, August 2013

Taking back control

Posted on by dystoniaandme

As you will know from my previous blog post a couple of days ago I was withdrawn from university after being on sick leave for a year because of my Dystonia. I had a few days of “why me” and “I want to go back to placement” before I actually sat down and thought this is not the end of the world, I refuse to do nothing, what can I realistically do now.  So I had a look at my local colleges and what they offered, to see if I could find anything that interests me. I had been toying with the idea of going into reflexology for a while now and discovered that one of the colleges near me offers it. As my hands are behaving very well at the moment, I have taken a leap of faith and applied for the course. I am waiting to hear now if I have an interview or not. Not only will I be able to study if I get place but it will be a great chance for me to meet new people.

On holiday we discovered that my ability to go out and about had grown, so I was able to do much more than I was used to. Since coming home I have made a conscious effort to try to maintain this new tolerance level. I have managed to come through and spend some time in the living room and eat with my family in the dining room etc often, which is a huge improvement to before where I spent the majority of my time in my room. I even made it to Church today.

I have reached a point now where I am finishing a chapter and starting a new one so to speak. I have spent the last year hoping that some cure would magically be found and that this september I would be back at uni. Now that the reality has hit, I am closing that chapter an opening a new one that is full of possibilities. Maybe I shall get on to this reflexology course, maybe I won’t, who knows where I will end up.

Dystonia has been controlling my life now for long enough. I acknowledge that it’s always going to be apart of me, but I control my own life and I’m taking back the reins. I just need to know my body’s boundaries and respect them, so that I can start living my life again.

 

Posted in September

Return from Holiday and Sensory tricks

Posted on by dystoniaandme

I am now back from a fantastic and relaxing holiday in the Cotswolds with my family. I think it did all of the us the world of good to get away for a little while. I was shocked and over the moon that I managed to go out everyday and did not have a full body melt down with a handful of seizures thrown in until the Thursday!! We went to a number of places which were more wheelchair friendly than I expected which was amazing, my favourite being Warwick Castle where we watched the jousting.

The week before we went away I saw my reflexologist twice to try to prolong the effects the reflexology has. I am extremely glad I did this as it meant that I slept well until the Wednesday when my body reverted back to its ‘i’ll keep you up till 3am’ normality. My reflexologist is away for a week or so now and I am really looking forward to her return so that I can have some spasm/pain-free nights again. I am now counting down to the 27th when I go to see my neurologist for my injections. It thrills me to know that with them being done so often the pain I normally endure for weeks shall now be almost nonexistent.

Whilst on holiday my eyes went blind several times due to the spasms. Normally this causes seizures, and a few times it did, however I again tried doing sensory tricks to my eyes to see if they would make a difference and for once I seem to have found one that works for me! It only works on the spasm that pulls my eyeball upwards so that only the whites of my eyes are seen. I have found that by putting pressure on my eyes and moving my hands in a downward motion a few times that it encourages the spasm to release. I could have danced with joy when I found this worked as it should reduce my seizures!

I am feeling extremely positive at the moment, and very relaxed after a wonderful holiday. I may not be in control but I am coping and finding ways around my little Dystonia alien. Just got to take it one day at a time.

Posted in Archive, July 2013

Retail Therapy and Reflexology

Posted on by dystoniaandme

Today has been utterly heavenly! As we are going on holiday on Sunday I went shopping with my sister, mum and a family friend to get some last-minute summer clothes as I didn’t really have any. It was nice to out in such nice weather and for a change trying on clothes was great as I was able to go down a size in both tops and bottoms which really made my day.

I bought the basic tops, leggings and shoes I needed, and treated myself to a beautiful summer dress that I am in love with. It was a fantastic day out, and whilst it left me exhausted it also put in the holiday spirit. Going out always takes it out of me and after trying on so many clothes and being out for hours I was so tired that I fell asleep on the drive back home.

I normally see my reflexologist on a monday, however as we are going away on sunday I decided to see her today as well so that I will hopefully be able to stretch out the benefit I get from it over the majority of the holiday. It still amazes me just how well reflexology works for me. I get several nights of good sleep out of it which leaves me with more energy to tackle my Dystonia with during the day.

I am so excited to go away!

Imagemy fab holiday shoes.

 

Posted in Archive, July 2013

A Year On

Posted on by dystoniaandme

I am now a year into my battle against Dystonia and life has changed dramatically. A year ago I was a student midwife, now I am disabled and spent a lot of time trying to raise awareness of Dystonia. When I first received my diagnosis it seemed like the end of the world, I did not know how I was going to be able to cope with life. Now I am much stronger person filled with determination to make a difference.

I strongly believe that everything happens for a reason and even if you cannot see the reason at first, eventually you will. I believe I have Dystonia so that I can help raise awareness of the condition and help bring about a change so that sufferers receive better treatment. I still have a long road ahead of me but its one that I won’t give up on.

I visited my GP today to ask about further treatment for suspected Lyme Disease. I responded extremely well to the first month-long course of antibiotics, due to this my GP has prescribed me 8 more weeks of antibiotics to see if I have any further improvement on them. My main improvement so far has been in my hands, which has been an extremely exciting development for me. When I see my consultant on the 16th of this month I am going to put across to him that Lyme Disease could have caused my Dystonia. As Lyme disease is curable with enough antibiotics some of my current symptoms could disappear for good, and only the Dystonic spasms shall remain.

I also visited my dentist this morning to have my teeth cleaned. I can not rate the dental practice highly enough, despite my spasms and seizures whilst I was there they were extremely kind and patient with me. As my tremor is dislodging some of my teeth it is calming knowing that the dental practice will do all they can for me.

This afternoon I have a session with my reflexologist. I am so glad that she is coming today as I am extremely exhausted. It amazes me how quickly my body gets tired. I used to be able to be on the go all the time but now just two quick visits have left me half asleep.

I still cannot believe that I have suffered from Dystonia for a year now. Whilst I hate this condition, I also embrace it. By embracing Dystonia I am able to put all my energy into raising vital awareness and funds. The more awareness that is raised the sooner a cure will be found. My next awareness challenge I have set myself is to turn parts of my blog into a book. I  hope that by doing this more people will learn of the condition.

Dystonia may control my body, but I control the path I take in life. I choose to make a difference!

 

Posted in Archive, June 2013

Rare Conditions, Doctors and Reflexology

Posted on by dystoniaandme

Since I posted my blog post about Lyme Disease and Dystonia I have heard from a variety of people who have Dystonia caused by Lyme Disease or have both Dystonia and Lyme Disease. It has been extremely interesting reading people experiences of the two conditions. What has shocked me is how common this ‘rare’ disease seems to be!

I was doing some research on the two conditions earlier today when I stumbled across a blog written by a Lyme sufferer. She, like so may Dystonia sufferers do, has had to fight and battle against the NHS for treatment. Again she unfortunately has had the same experience that many Dystonia sufferers do in that a neurologist misdiagnosed her as having a ‘Functional Movement Disorder’. The more I read about these supposedly rare conditions the more it seems that the moment a doctor feels a little bit out of their depth they slap the label Functional on to their patient without listening and without further testing. From what I have read this often causes sufferers to question themselves! Whilst I understand that some people must have Functional disorders, many people don’t and are wrongly labelled as so, which causes problems when it comes to receiving correct treatment. It is frankly disgusting.

I came across an article earlier today which listed the neurological symptoms of late stage Lyme Disease and I ticked all but one box. Which has raised my hopes just that little bit more, that I may have found the cause to my Dystonia. It even offers a bit of hope that one day with treatment I may be lucky enough to have some improvement.

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Today I have felt rather under the weather, with my spasms being completely out of control. This has left me feeling exhausted and craving sleep. I have unwillingly refused to let myself sleep all day in the hope that I will manage to get a decent nights sleep tonight.

Yesterday I had my second reflexology session which was once again heavenly. It left me extremely relaxed and sleepy. I managed to get 12 hours sleep which was very much-needed. I am arranging for my next session to be done in the evening so that afterwards I can snuggle straight into bed and go to sleep. My reflexologist was hopefully that if we did an evening session so I could go to sleep afterwards then the benefits of the session may last a few days longer, which would be fantastic!

I cannot wait for my next session.

 

Posted in Archive, May 2013

Reflexology Session

Posted on by dystoniaandme

Yesterday I had my first reflexology session with a lovely woman. She was able to come to my house and do it, which was perfect for me as it meant if my body reacted badly to it then I was in the best place, with easy access to the necessary medication. I was hoping that by having reflexology I would be more relaxed and would be able to sleep better.

It was a fantastic session, that left me feeling extremely relaxed. I was so happy that my body did not react to the reflexology, which enabled me to relax and actually enjoy it. During the session she concentrated on areas that related to pain, my liver and my kidneys. The reason for this is that the amount of medication I am taking will not be doing my kidneys and liver any good, so by concentrating on them it should help to detox them.

I did not do much for the rest of the day as I was extremely tired from the session. In the end I went to bed around 8pm because I was struggling to keep my eyes open. Normally I would have read a book before I go to sleep to help relax my body, but I did not even have the energy to read. Most nights I do not get to sleep till the early hours of the morning and even then I will carry on to wake up 4 or 5 times due to painful spasm. Last nights sleep was amazing! I slept for a total of 13 hours and did not wake up once! I was even full of energy today which was fantastic.

I am so happy that I was able to get a good nights sleep, it made a real difference to my energy levels today. As the reflexology session appears to have had such a fantastic effect on me, I am planning to book more and see if these improvements carry on. I am extremely hopeful that these sessions will continue to have a beneficial effect.

 

Posted in Archive, May 2013

Sleep & Dystonia

Posted on by dystoniaandme

One of the things I am struggling with lately is getting to sleep and staying asleep. When I am tired my spasms tend to get worse, which makes getting into a comfortable position to go to sleep in is rather hard. Previously when going to sleep I would lie down in bed fully stretched out, however I can’t do this any more and this is proving to be an issue.

One of the symptoms I am struggling with at the moment is in my legs. I have a constant tugging sensation along with pain in my knees and thighs, which I seem to only be able to relieve by pulling my legs up. Although this does get rid of the painful sensations it certainly lessons it, however I then find it extremely hard to then straighten my legs back out again. Some nights I have had to go to sleep with my legs crossed. The pain in my legs along with the current pain in my neck caused by my new neck spasms is really impacting on my sleep.

Sleep is an important part of dealing with Dystonia. Having your muscles spasm constantly on and off through-out the day is an extremely tiring experience, which leaves you exhausted. I have often taken naps in the day just so that I have some energy to carry on fighting against the Dystonia with. Dystonia normally disappears whilst you are in a deep sleep, however when in a light sleep the spasms can appear. At the moment due to pain I am finding it extremely difficult to get into a deep sleep, therefore I am constantly woken up in the night due to spasms. This leaves me feeling exhausted still when I wake up and starts a vicious cycle.

At the moment I have taken to going to sleep with a hot water bottle under either my feet or knees to try to relax my legs, and a heated lavender wheat bag around my neck. The combination of the two is thankfully providing me with enough temporary relief to enable me to drift off to sleep. I have debated taking sleeping tablets however I am unable to do so with the medication I am currently taking.

I am hoping that by increasing the number of times I meditate a day and by starting to have reflexology done that I may start being able to sleep better. Only time will tell if this combination will help. So I shall keep my fingers crossed.

 

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!