appointment – Dystonia and Me

Archive, November 2021

Prolapse, Painsomnia & Filters

Posted on November 17, 2021 by dystoniaandme

It’s hard to know to where to start. I’m so tired from the painsomnia and I know that is partially responsible for my level of frustration, emotional upheaval and general anger towards this current situation. Focusing on one hour at a time seems to help.

Being very much limited in my capacity to move much is hitting me hard. Having finally found a medication that helped my Dystonia, then developing this prolapse and adapting to its limits feels like a slap in the face. I cannot empty my bladder fully due to it, which is resulting in bouts of incontinence with no warning, I haven’t been able to go the loo properly since Thursday last week and that’s causing its own pain. I move around with my thighs clamped together terrified of making it worse. There are 36weeks to go before the first consultant appointment.

Acknowledging that this hit my mental health is important. I was already in a bad patch due to ongoing hair loss causing anxiety. This new complication on top knocked me down, hard. I know I’m a fighter and will adjust with time. However it’s important to recognise that what I’m feeling is valid.

Before I sign off I want to touch on one thing; look beyond the filter. In the first photo above the filters has smoothed out most signs of exhaustion, my eyes almost look sparkling and awake. It’s a nice image with little hint of what’s going on. This is an image I would post on my personal profile or my author page; it doesn’t reflect my current issues. The second photo is filter free, the bags under my eye are clear to see and the dark rings obvious. The puffiness in my face from my meds hasn’t been smoothed out. This I would post on my Dystonia and Me page. It is a truthful image.

I never posted either photo (until now). It got me thinking about the need to act ok when I’m not. It’s quite a damaging reality. We see it everyday. Just some food for thought. Personally I’m going to stop using filters, see the reaction to truthful imperfections and struggles. Live my truth. (unless me and my daughter are using it to be bunny’s)

Archive, August 2021

Adapt, Rethink, Go

Posted on August 22, 2021 by dystoniaandme

We recently had to return the power wheelchair we had on hire. It had been with us for the best part of a year and had quickly become a very integral part of daily life. It reduced my pain, dislocation frequency and enabled me to get out and about everyday. It was freeing. We’d hoped by the time it had to be returned that I’d have been seen by the local wheelchair service for an assessment as currently I dislocate my fingers while trying to push my manuel chair. However it’s a long waiting list and an appointment date is still a while a way.

In the meantime I’m reassessing how much activity I can do and what I do each day. My head deffinently believes I’m more capable than what my body thinks I am able to do. A lot of this week has been spent resting and trying to find a happy medium. However I’m also currently on week three of my period and I know that when I have extended bleeds I generally feel rubbish and my joints and muscles seem to be worse in general.

I’ve started introducing sleep hygiene into my night routine to help improve the quality of my sleep and to see if it improves how rested I feel. I’m trying to have no screens for an hour or two before bed. Instead I’m reading and crocheting. This has also given my mental health a little boost as well which is positive.

I’ve had a gyny appointment come through for the end of September, so not long to go now. Hopefully this one won’t get cancelled.

Archive, January 2021

Lockdown, Homeschooling and Work

Posted on January 7, 2021 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.

Archive, Novemeber 2020

Vulnerability is Strength

Posted on November 14, 2020 by dystoniaandme

It’s a painsomnia night so I thought I would share with you all something that I’ve been coming back to frequently recently. Personally I’m a very sensitive, emotional person; now some may view that as a bad thing, others a good thing, some of you will be neutral. I can see the pros and cons, but it’s what makes me me, so yes I may cry buckets everytime we watch certain episodes of Vikings, or The Lion King but i’ll also laugh myself to stitches five minutes later. It’s a rollercoaster of life. It’s real, honest and truth.

So why do I, and I know many others with chronic illness will be able to identify with this, go on autopilot everytime a doctor, family member or friend asks after us? You know the drill, you walk into the drs room the doctor greets you and asks how you are before you get down to the nitty gritty. It’s a formality, so like a healthy person you respond with I’m good thanks, and you? It’s ridiculous! Why is it so hard to say you know what I’m actually not great at the moment and I need some help.

I forced myself to do this yesterday. I could hear the usual auto response slipping out my mouth, so I caught myself, took a breath, looked the doctor in the eye and said I’m pretty awful and I don’t know what to do. Now saying that wasn’t easy but boy did the relief for sharing the burden feel good. Making that choice to let the facade of I can cope with everything slip for a moment to ask for help took an incredible amount of inner strength and it’s something I’m going to practice doing more often. Vulnerability is not something to view in a negative light, in fact it allows others to reach out and see if they can improve your situation. Sometimes just talking things over can make a difference.

So just pause for a moment and think; are you like me and guilty of putting walls up? Is it worth flexing your inner strength and letting that vulnerability show? Let me know what you decide to do!

Archive, August 2013

Amazing Consultant Appointment

Posted on August 27, 2013February 24, 2022 by dystoniaandme

Today I went up to London for an appointment with my neurologist. It went fantastically well. This was only the second time he has seen me with my jaw not in spasm, the last time was our first meeting last October, and he seemed very happy that I was not in agony this time. As usual I went armed with some ideas/questions that I wanted to discuss with him.

He brought up the fact that I had seen the infectious disease doctor the other week, and said that he was happy for me not to have the blood tests and lumbar puncture, but would arrange it if I decided I wanted it, and he was happy for me to get my gp to arrange for me to have 2-4 weeks of IV antibiotics. I am thrilled at this, as it was not a conversation I expected to have with him and it went completely in my favour. I have been on oral antibiotics for several months now, and adding IV antibiotics into the equation should hopefully get rid of whatever Lyme is left.

I had my usual injections in my neck and jaw, however after discussing the ongoing issue of my glasses setting off more eye spasms he decided to inject Botox around my eyes to see if this helps improve things. I am really hoping this helps as I am meant to wear my glasses for pretty much everything, so for a fair while now I have dealt with everything being rather blurry.

I brought up with my consultant that I would like to have CBT (cognitive behavioural therapy) to help me manage my pain triggered Non Epileptic Seizures and neuro-physiotherapy to see if that will help me with my spasms. He was great with this and agreed both would be a good idea and that if I went through my GP I would be able to have it done locally. He has also offered to speak to the neuro-physiotherapist, when I get assigned one, about my condition so that the physiotherapist understands it better and therefore can treat me appropriately.

Overall I am completely over the moon with how well the appointment went, and have left with a date in hand for my next lot of injections in six weeks time.

Archive, August 2013

ATOS appointment & Upcoming Specialist appointment

Posted on August 14, 2013August 14, 2013 by dystoniaandme

Yesterday I had an appointment with ATOS to prove to them that I am disabled and to discuss/show them how much Dystonia affects me. After some horrific telephone conversations with them, which I am making a formal complaint about, and from reading some dreadful news articles about them, I expected the appointment to be awful. I had mentally prepared myself to meet a rude practitioner who was not prepared to listen. I was therefore pleasantly surprised by the lady who saw me. She came across as if she really did want to help me.

Now I don’t remember much of the appointment due to a few seizures I had whilst I was there but the bits that I do recall and the parts that my mother has informed me of paint a picture that goes in my favour. Upon arrival my feet were already in spasm due to the cold outside, then the lights set my eye spasms off, and some head movements I was asked to do set my head tremor off. The physical assessment side of the appointment was stopped early as the Doctor thought it would be unsafe to carry on with it. Therefore only the verbal information my mother and I gave her (which she typed up) was complete. I left her with copies of two letters from my consultant as well. After everything she saw I do not believe she could write anything against me. However I am still hovering on the side of caution until I receive the report.

This coming Saturday I have an appointment with an Infectious Disease specialist who has an interest in Lyme disease. I am rather excited and nervous for this appointment, as hopefully a treatment plan shall be discussed/put in place. I have had many conversations with his lovely secretary who has been extremely informative, understanding, helpful and has helped me trust I have made the right decision choosing this Doctor. I am trying not to get my hopes too high incase the appointment does not reach my expectations, however I am still very excited. I have prepared a list of questions to ask in the appointment so I know exactly where I stand and what treatment options are available to be.

I look forward to Saturdays appointment revealing my next steps!

Archive, August 2013

ATOS appointment & Upcoming Specialist appointment

Posted on August 14, 2013 by dystoniaandme

I look forward to Saturdays appointment revealing my next steps!

April 2013, Archive

Easter Day + Consultant news

Posted on April 1, 2013February 24, 2022 by dystoniaandme

Every Easter my family and our family friends go Egg Rolling. It’s always a great morning out. We decorate our hard-boiled eggs and then compete to see whose roles furthest without smashing. I was slightly worried about how my egg would look considering my hand hates my holding pens, however despite my hand spasming my egg turned out pretty well.

We went up to the local woods, and took the supposedly wheelchair friendly path round. I went wrapped up in several layers of clothes, two blankets and had two hot water bottles on me. It was so cold that snow from several days ago was still on the ground. I am happy to report that I survived the cold despite a few spasms and seizures – that’s another point to me Dystonia alien. It was so nice to be out and about.

Above is a picture of my egg. I’m rather proud of how well it turned out despite my spasming hand :-).

I am also happy to report that my consultant has been in touch and has agreed to administer botox injections to my jaw tomorrow! I am still waiting to find out a time, however I am extremely relieved to know that it can be done so quickly! I shall take advantage of this appointment to discuss with him the recent sudden changes in my condition.

I am exhausted but feeling much happier knowing that tomorrow I get to see my consultant!

Archive, February

Benedict’s Obstacle Course.

Posted on February 8, 2013February 24, 2022 by dystoniaandme

Imagine this: You wake up in the morning, your eyelids open but you can see nothing due to a spasm pulling your eyes back. You massarge around your eyes blinking violently, trying to beat the first obstacle of the day. Suddenly your sight is back! You celebrate silently, not wanting Benedict to realise you have won, in-case he wants to take revenge. Next you decide to dress quickly before he wakes up and realises what you are doing. You have your top half done, and one leg in your jeans, when suddenly Benedict strikes! Your right leg contorts, as if it’s trying to physically turn backwards, meanwhile your foot has turned under and is dragging along the floor. You stop, take a deep breath, and then start attacking your own leg. Desperately trying to get your jeans over it.

Bang! Your hurried attempts have caused you to fall backwards on to your bed. However you keep on wrestling with your leg until finally you have won. You are officially dressed. You look in the mirror, do you dare attempt to tame your hair and do your make up? With a quick glance at the clock, you decide to attempt to do it. Nervously you brush through your hair, and quickly put it up in a simple pony tail. Relief sweeps through your body. Now on to the make up. Your doing well, almost done. Then, suddenly, pain sears through your eye. Your right hand, which is holding the mascara brush, has spasmed, causing the brush to go straight into your eye.

It has now been two hours since you got up. You have finally managed to get dressed, with hair and most your make up done. Now you need to get through to the living room, so you can grab your bag. Splinting your right hand up first, so as to contain any more unwanted spasms, you slip your arms through your crutches and hop out your room into the hall way. You glance down at the shoes and bags scattered around on the floor like a minefield, and hop around them. Careful not to misplace a crutch or slip.

Now you have reached the penultimate hurdle. You squeeze yourself past the sofa and clothes horse into the living room. Reaching down you pick up your handbag, and swing it over your shoulder. You give yourself a satisfactory smile. You are beating Benedict’s obstacle course so far. You start hopping forwards. You go to squeeze back through the gab between the sofa and the clothes horse…when your right knee collides with the end of the sofa. The knock immediately triggers a spasm. Your leg is twisting side ways and upwards. Pain is taking over. Your balance is now lost. You haphazardly try to place your crutches in a position that will stabilise you. It is a losing battle. You fall backwards onto the other sofa that is just behind you.

After the spasm has calmed down, you decide to take on the final hurdle. This time you choose to leave the crutches behind. Hoping that it will enable you to pass through the dangerous gap between the sofa and clothes horse with ease. You jump up onto your good leg. Keeping your right one off the floor, bent slightly. With arms whirling round widely to prevent you from falling, you hop successfully past the sofa and back into the hallway. You have finally reached the front door! You do not have much further to go. You link your arm round a family member for support and hop out the door. In front of you lies three large steps. Each one looks like a mountain. It fills you with dread. Half of you wants to turn back around, go back to bed and claim defeat. However you hold your ground and preserver, refusing to give in to the evil Dystonia alien, Benedict. You bend your good knee, and cling to the railing with your working/free arm and hop up the huge steps.

You have finally reached your goal. You have reached the car that is waiting to take you to your doctor’s appointment. For the mean time, you have beaten Benedict the Dystonia alien.

Welcome to my life!

Archive, January

A trip to the Doctors

Posted on January 29, 2013February 24, 2022 by dystoniaandme

Cartoon Doctor I paid a visit to my doctor today, as my Dystonic leg is still really bad, and the extreme tremor has been going on for 11 days now. I was hoping he would be able to prescribe me some sort of muscle relaxant to try to take the edge of it. I also wanted to discuss with him about being referred to an Orthotic department, to talk about getting some sort of splint or brace for my leg, as I have talked to and read about people who have tried this and good results.

My doctor was not to sure what to do about the tremor in my right leg, and said that hopefully it was just one of those things that comes and then goes. I am really hoping that he is right as I find this extreme tremor very difficult to handle. It has really restricted how much I can do, for example in the day when I am on my own, I literally have to spend the day in bed, as I need people to help me hop around. I have decided that if by this time next week it is still bad then I shall go back to my Doctor and ask for him to prescribe me a muscle relaxant just so we can see if it works.

He seemed rather interested in my suggestion to try a brace or splint, and has said that he will write a letter to the surgical Orthotic team at my local hospital, and we will go from there. This was very positive, as I had expected him to say it would be best to discuss it with my consultant first and let my consultant handle it.

Overall it was a very positive appointment. Considering my Doctor knows extremely little about Dystonia, he really does try his best to help me the best he can. I hope that in the nicest way possible that I won’t have to see him next week. Just going to have keep my fingers crossed and hope that my right leg calms itself down.