Posted in Archive, January 2021

Hormones and Chronic illness

Hormones, they hit us out of the blue in puberty and never stop showing up no matter how much we hope they may just skip a month. Even before my diagnosis of Dystonia my monthly visits from the witch were awful.

During my teen years my periods were unpredictable; sometimes not showing up for months and sometime arriving every two weeks. They would leave me doubled over the toilet in the night throwing up from the cramps, and going through a pad in under an hour over and over again. I spent years visiting my then GP who told me all this was normal and that I needed to learn to deal with these symptoms. It was only then when I was studying for my midwifery course that I had the courage to go to a new gp who recognised my distress and referred me to gyny. One operation later and I was diagnosed with Endometriosis.

Quote from Camran Nrzhat, ND.

Now my periods are worse than before and on average last 72 days. Yes you read that right. They last 72 days. Now normally they’d treat with a hormonal contraception to stop the period. Here’s where my health comes into play. My spasms, now I don’t know whether this is my Dystonia or EDS, but I can’t use any intrauterine device as the spasms physically reject it from my body which is fairly uncomfortable. The pill*/patch/injection all work on giving you progesterone however I am unfortunately one of those rare Ehlers Danlos suffers who can not tolerate this. The increase causes a dramatic increase in dislocations body wide.

*I am aware there are pills that are not just progesterone based however due to the fact I get daily migranes with aura I cannot take these as it increases my stroke risk.

Between the prolonged bleeding which leaves me severely anaemic (currently 3.1), the increase in spasms, dislocations, fatigue, it’s fair to say hormones really screw me over. So gentle hugs to all who also experience this. Remember chocolate always helps!

Posted in Archive, December 2020

Chronic Aspiration

Today I had a meeting with speech and language to assess my ongoing difficulties with swallowing. Some days the issues fade into the background and are not to much of a problem, other times I struggle to swallow anything which has previously resulted in over a week in the hospital on IV fluids and having a temporary NG tube placed. I had no idea what to expect from the appointment as I’ve not met with speech and language before.

She came to my house, and was immediately met with Stefan and Evie talking a thousand miles a minute, both very curious over her PPE. We discussed my symptoms and long medication list and then she got down to examining me. She had a feel of my throat whilst I drank an ensure and picked up my usual spasms. While we were talking I was doing my usual post meal coughing, something that’s mild enough that I don’t really notice it, nor was I aware that my voice then became hoarse something my partner brought up.

The speech and language therapist explained what was happening was due to my spasms that I was aspirating during my meals. She’s arranging a barium swallow so they can get a look at the extent that this is happening. It also explains why I keep getting such bad chest infections; the last one left me needing two rounds of antibiotics and a course of steroids.

She mentioned the possibility of a PEG tube again, something that’s been circled around for a while, as well as refferal back to the dietitian. This will hopefully be after the barium swallow has been conducted as this should show what consistency of liquid will be best for me.

I’m feeling quite positive about it all after today’s meeting and will be hearing from her again in four week for an update.

Posted in Archive, December 2020

So This Is Energy?

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.

Posted in Archive, Novemeber 2020

Vulnerability is Strength

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!

Posted in Archive, October 2017, September

Mental Health & Chronic Illness

Mental Health awareness day was last week and I wanted to write this blog post then but honestly it was too hard. My mental health right now is not great. I’m by no means awful but it’s not where I’d like it to be. It’s been an accumulation of being chronically ill for numerous years and stressful life events adding on top of that.

Image result for mental health

A major part of the problem right now is my medication. One of the many side effects that many of my medications can cause is anxiety and depression. Whilst I wouldn’t class myself as depressed, I am aware that my anxiety and amount of pain attacks have increased recently and I’m defiantly on the weepy side. However life events haven’t helped either, Just last week I went to collect my little boys prescription from the chemist and found myself being motioned to sit silently on the floor with him due to a lady with a knife ransacking the place; this understandably has made me anxious about leaving the flat on my own, even though I know that I am being irrational as I know that the chances of being in that situation again are very small.

Yesterday I attended the emergency eye clinic at my local hospital and was informed that I have my fourth bout of optic neuritis is a year and a half. Due to this and some more symptoms they have made the decision to refer me to a specialist neuro and carry out testing again for multiple sclerosis; another spanner in the works.

Between my physical & mental health plus the stress of uni work, I feel like I need to let myself have a good cry, pick myself up and carry on except there isn’t time to cry. Don’t get me wrong I love my life but I’m finding it hard to know what to do to help myself. I force myself to do what scares me like leave the flat but it’s draining working up the courage to do so. I would talk to the doctor about it but I daren’t risk it as I know they will stop my painkillers if they start worrying about depression which I need for my seizures. I have ordered myself a mindful mediation manual and CD and hoping that a holistic attitude will help.

Posted in Archive, January 2017

“Just Stay Positive”

I have spent the majority of this week at varying hospital appointments, today is my rest day before heading back to the hospital for more testing tomorrow. Frustration and disappointment has been my main response so far to these visits. Part of this is most likely because I am under the care of several different specialists who are experts in their respective fields and generally wonderful. I’m quite lucky to have them as my doctors. However, every now and then I meet a new Dr and have to fight the same misconceptions and preconceived ideas from scratch; it’s exhausting, emotionally draining and depressing.

I’m quite good at finding the positives in being chronically ill,  I’ve been known to be in agony, hospitalised with spasms and dislocations and still be giggling away at whatever ridiculous manifestation my symptoms have appeared in this time. That being said I’m aware of how important it is to be completely honest with my care providers about how I’m managing and asking for help when I need it.

I had been counting down to yesterday’s appointment to see the local obstetric consultant as I am really at a loss with what to do to help myself. The advice so far has been plenty of bed rest and to use my wheelchair if I have to go out. This makes sense and I’ll admit I was unreasonable hoping the Dr yesterday would wave a magic wand, but university restarts at the end of the month, my fingers dislocate when I push myself and I’m pretty sure turning up to uni doesn’t count as bed rest. So I sat in front of the consultant asking if there was anything, even the smallest suggestion, that he could think of to help me help myself. “Just stay positive” was his advice. It was also the last thing I wanted to hear. 5 minutes later he admitted he didn’t have a clue about any of my conditions, so I walked him through them briefly. His advice changed to just come to hospital every time you have a fainting episode so we’re aware of you; my episodes are at the moment generally occurring over 10-20 times a day, so I’ll just move in shall I?587860e5ecea791e83ab995d35b2d52a

This whole appointment got me thinking about my array of conditions, which are confusing and do overlap, so for those of you who are curious here’s a brief introduction.

  1. Generalised Dystonia – this trickly little brain alien causes painful and often debilitating spasms in my eyes, jaw, neck, left arm and torso. It’s not curable, and every patient presents slightly differently. It’s currently playing up as I’m off treatment for the rest of my pregnancy.

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2) Ehlers Danlos Syndrome Type 3 – Unlike my Dystonia, unless I have dislocated or subluxed you cannot tell I have this condition. It causes fatigue, brain fog, pain, dislocations, allergies amongst many other symptoms.

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3) Postural Orthostatic Tachycardia Syndrome and Dysautonomia- This is a relatively new diagnosis for me. Currently this means I can’t even sit up without my heart rate shooting through the roof and my blood pressure plummeting. It’s pretty bad at the moment, due to blood pooling when I eat I pass out during meals. I also pass out if I get too hot, move too quickly etc. My autonomic nervous system is basically a bit temperamental and therefore many different automatic functions can malfunction.

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4) Non Epileptic Seizures – Previously my care providers thought these were pain related but now they think my PoTS may have something to do with it. Often Drs misunderstand these seizures and presume they are either psychogenic or part of drug seeking behaviour.nes.jpg 5) Endometriosis – I fought for years to have this investigated, constantly being told that it was simply bad period pains.  Many drs ignored the fact that they were every 2 weeks, extremely painful, and very heavy. By the time a diagnostic laparoscopy and treatment was carried out extensive damage had been done and I was told that my chances of unassisted conception were very low. This make me all the more grateful for our little miracle.

6) Chronic Lyme Disease – Lyme Disease is a bacterial infection that if caught early can be treated easily. When it becomes chronic, like in my case, it is extremely hard to cure. It affects multiple systems and therefore is frequently misdiagnosed.

Posted in Archive, October 2013

A change in Tactic

So my body seems to have decided to change its tactic. Normally when I am in a lot of pain I have a Non Epileptic Seizure. The last two weeks or so my body has disconnected from certain parts of me or all of me, leaving me functionally paralysed. I have had a handful of seizures as well but the functional paralysis does seem to be my body’s main coping mechanism now.

I am in two minds about this change. On one hand I am happy that there has been a decrease of seizures, as it means I am conscious more often, not forgetting hours either way of the seizures etc. On the other hand the functional paralysis can be rather scary. The first time it really hit me I lost the connection to the lower half of my face for 7 hours. A big part of me knew it was just my body coping with pain, but a small part of me was terrified that something worse was at play such as a stroke. When the functional paralysis comes out to play I either disconnect for one to two minutes or I disconnect for hours. There is no middle ground.

As I type my right foot is in spasm. It felt like the force of the spasm was trying to break my big toe. I was in a lot of pain and was beginning to think that I should be sensible and shimmy down the bed a bit so that I did not hurt myself if I ended up having a seizure. However instead of seizing both my legs ended up functionally paralysed despite my left leg having no spasm in it at the time.

I am seeing my neurologist on Tuesday for my injections and a chat, so am going to add functional paralysis to my list of questions. I’m not sure if there is anything he can suggest to help but he may be able to advise something. I think I prefer my body coping this way but at the same time it scares me slightly.

Posted in Archive, March 2013

Doctors, Star Wars, Horses and More!

This week has been rather busy, which has left me feeling tired but extremely happy. On Monday I visited my GP to seek some advice. To be honest he was not really able to give me any, however I expected this. I explained to him the disastrous trip to A&E the other weekend and asked if he could give us any advice for if this happened again. Whilst he was shocked by the treatment we had received, he was unable to offer any advice about what we should do the next time this happens. On the bright side he has said that we can continue to use the muscle relaxant that we were given on the Friday in emergency situations as a last resort. We are still waiting to hear back from my neurological consultant in regards to advice/explanation on why the sudden change in presentation etc.

On Wednesday I had a couple of friends round, and I had a really good laugh with them. It felt so good to feel ‘normal’. I spent the day laughing and watching Star Wars with them, which was pretty much perfect!

Yesterday I was well enough to go back to riding after having to have a week away from it. I was  completely ecstatic! The lesson went extremely well, and I managed to do more rising trot than I have managed to do before which was incredible! The horse I ride, Connie, is extremely patient, which gives me so much confidence, as I feel that my spasming limbs will not cause to much of an issue. I came home from riding covered in so much of Connie’s hair that I was beginning to look a bit like a horse myself.

Last night I attended the penultimate pain support/management/research group. As usual it was fantastic and I had a good laugh with everyone and left it feeling very relaxed. I have suggested to the group that once it finishes we arrange to meet once a month for a coffee, so that we can all continue to support each other. It is something that they all liked the sound of as we have get on so well together.

Today I am exhausted, however I am glad of this. I am not used to lots of stimulation so after having a busy few days, I am going to relax and take it easy. I also have a busy weekend planned with friends visiting me on Saturday and Sunday. This week has been perfect and I have felt so ‘normal’ through-out it. I am an extremely happy girl.

The following quote/image, is one that I say over and over to myself every time I feel like I am being defeated or that things are hopeless. Just because I have not managed to cope today does not mean that tomorrow will be the same. Tomorrow I could think of something else to try/do. I just need to keep on smiling. As long as there’s a smile on my face then I know I am winning.