Catch up, what's been happening with me since 2012?

 It's been a long time since I wrote a blog post here. 

Since I last wrote here I managed through trial and error of diet, and access to reduce cost therapies (deep tissue massage and a holistic therapist) I slowly gradually gained more energy. 

Removing wheat, dairy, and grains, reducing carbs from my diet helped enormously, as did vitamin D supplements.  

I managed to regain a life again, and then in 2015 I was hospitalised during pregnancy, my daughter was stillborn and a retained placenta meant I needed surgery.  Unfortunately the surgeon did not remove the placenta, and that began 10 weeks of harrowing traumatic experiences of neglect by the medical profession.   I ended up having THREE surgeries to remove the placenta, 2 of which I was told were completely successful, and I was told numerous times that it wasn't possible the placenta was still in my Uterus.  It was the rotting flesh of the placenta which meant I had sepsis, was too weak for a 2nd surgery until I'd had IV antibiotics and blood transfusions for 24 hours...  

I digress, I just wanted to do a quick catch up, the 2015 year of hell left me with a severely restricted diet - the antibiotics wiped out my gut biome and I had severe abdominal pain.   Since then I've been on low fodmap diet, which is very difficult to manage.  

My relationship ended in May 2019.  I started dating again Jan 2020, then weeks after my first date, lockdown happened. 

My support network I'd built around my professional expertise had been removed instantly.  2 of my closest friends disowned me because I made a choice to continue seeing someone every few weeks in lockdown - I live alone and had NO physical contact with any other human.  I discussed with my GP, who was of the opinion my decision was reasonable, and my mental health was important. 

So that's the recap, please read the next post for what I actually wanted to say :D 

It's 8 months since I last posted.

That's a good sign- it means that I've been able to do things other than record my progress in managing this illness!

I'm a lot better than I was last time I posted, I still suffer from extreme fatigue, diminished cognitive functioning, short term memory, mixing up words, not being able to think of words, poor concentration.  I have aches and pains all through my body, and my bones, especially my joints.  At the moment I am experiencing a sharp pain in my left hip as I walk.

My diet hasn't been great this last few months, and as a result I've noticed my energy levels slipping.

I've had rectal  bleeding for about 2 weeks, so got my bloods tested.  This showed that despite having been on Vitamin D supplements for about 6 months, I was still deficient in Vitamin D.  I've doubled my dose, and since then have noticed a marked difference in the stability of my moods, and the intensity of my emotions.

A few weeks ago I rebelled against my strict diet and ate exactly what I wanted to, I really enjoyed the freedom of being able to eat when I was out, not having to meticulously plan and prepare foods.  However very quickly I noticed the change in symptoms.  Bloating in my stomach, headaches, mood swings and irritability, increased fatigue, more pain in my bones and joints, earache, etc, etc.

It's been a while since I wrote here, I can't remember the last entry, what I wrote about, but here I am.

this morning I woke up to my alarm, first time I'd set one in a while.  I'd set it so I could go to my "Coping with Depression Group", something which I've found immensely useful over the last 12 weeks (today was the last session).  I felt positive when I woke (mentally & emotionally) but physically not so great.

I did look to see when my last post was, which was back in September.  In that time I have noticed a marked improvement on my symptoms.  I've changed my diet radically- strictly no wheat, dairy, eggs, yeast.  I've been eating mainly fish, and for 6 weeks no meat at all.  I also stopped eating potatoes.  My weight has continued to drop- I'm now 63kg. (I was 80kg) and I'm feeling and looking a lot better.

In the last 3 months I've been having weekly deep tissue massages at a local women & health centre which provides subsidised treatments.  I've also been seeing a naturopath & craniosacral therapist once a fortnight.

The naturopath has been a brilliant support to me, really listening to me, understanding and giving useful advice and guidance on things that could benefit me.  She's also given me craniosacral treatments too.  The craniosacral treatments I couldn't really notice, except for one time when it completely took away the rather unpleasant headache I was having.  What the craniosacral has helped me understand is that I am not in touch with my body.  I don't notice how it feels, I'm not aware of it.

I've also joined a "Five Seeds of Wholeness" group within New Unity, a unitarian church that I've received a tremendous amount of support from in the last 4 months.  The five seeds are: Connection, Compassion, Mindfulness, Gratitude and Generosity.  The mindfulness one has led me to a deeper awareness of just how "unaware" I am of my body.  When I attempt to be "mindful" I realise that I'm not, and that is usually because my body is in pain.  The more mindful I am, the more I feel the pain.  I realise that disconnecting from my body has been an unconscious coping mechanism, and the more aware I am of this, the more I am attempting to let go of it.  If I am more aware of the pain in my body, I will also become more aware of what is creating it.  The more I become aware of what's causing the pain, the better chance I have of recovering.

That's the approach I'm taking any way.

I've gone from barely being able to walk my dog around the corner twice a day, to being able to get out and meet people 2-3 days a week, which is absolutely fabulous.

But, here's what's happened- I've done too much and then had really, really bad days as a consequence.  It's a learning journey and I trust I'll get better at learning how to manage my condition.

I also sincerely hope that I will learn more about what causes my symptoms.  There are so many different things out there that purport to have a positive effect.  I feel confused about it, how do I know which works?  There simply hasn't been enough scientific research done to be sure about any particular approach or method.

Naturopath, Craniosacral, Chlorophyll, Alexander Technique and sleep

I had my first appointment with a Naturopath who is also qualified in Craniosacral therapy last week, it was mostly taking a case history, and I feel confident that together with this lady I will be able to make progress on recreating health in my body.

Why haven't I gone to any alternative health specialists before?  Because I simply didn't have the money.  I've joined a local health centre that provides reduce rate alternative therapies for those on benefits.

And, now that I've got my benefits sorted and a few months back dated means I have money to pay for treatments, not for long, but enough to help and make a difference.

I've been taking chlorophyll in water the last few months and the result has been complete elimination of cravings of sugar, and reduced cravings for salt.  The result of that is that I've lost 10.5 kg
Wooo hoooo!!   Loosing weight hasn't changed any of my symptoms particularly, but I'm sure not having to move so much weight will mean a reduction in the amount of energy my muscles require, which can't be a bad thing.

I've been sleeping before 12 ever night for the last week, the earliest being 9.30pm, and a couple of nights as late as 11.30pm, this is the earliest I've ever been able to go to sleep, so again, can't be a bad thing!!

I'm a little impatient I guess, after 2 months of eating EXTREMELY healthily- no sugar or processed foods, no dairy, eggs, yeast or wheat (one blip about 4 weeks ago involved chocolate eclairs), I've been extremely good, yet still no noticeable improvements in my symptoms, still as tired, still in as much pain constantly.


This morning I woke at 5.30am, understandable because I allowed my body to sleep at 9.30pm, when it wanted to.  I exerted myself yesterday, a friend helped me organise my boxes of belongings in a garage, so I was stood up for about an hour doing that, although I didn't lift any heavy boxes, they did it all for me, it was way more than my body felt comfortable doing.  The plus side is noticing that I've stopped pushing myself so much, I allowed him to do way more than I ever would have before.

So that's a good reason to celebrate!

 I've also been much more aware of my anxiety levels, they are high, but I've also noticed that my breathing, which is laboured even while lying down is not caused by the anxiety.

The Alexander Technique sessions I've had helped me recognise that my muscles were in a constant tension- flight or fight mode, and I've been focusing on encouraging my body to be in a relaxed state of awareness, and it's helping.  Definite improvements in the level of tension in my body.


As I lie here in my bed thinking about the things that I want to do today, I realise that it's really not that I'm lacking in motivation, that's absolutely not the reason why I'm not doing them right now.  The reason is that physically, I feel like shite, my body is sore, in pain and fatigued, my bones hurt, my muscles hurt, my head hurts, I'm short of breath.  Wanting to do anything physical with those symptoms would be considered abnormal.   And that's what I've been for years- pushing through and doing things anyway, regardless.

I'm relieved that I'm not doing that any more, sure I'll probably relapse a little, it's a new behaviour I'm adopting, but it feels great that I'm listening more, and giving my body what it needs.

True, there are some things I need to do, regardless of how my body feels- walking my dog is one of those, as well as cooking & doing the washing up, until I can get the money to pay someone to do those for me, I have to push my body beyond what it is comfortable doing.


After the appointment with the consultant I made a decision, that I wasn't going to sit around waiting for them to give me what I needed, because I realised they simply could not give me what I need.  They don't have a treatment plan.  They have no idea how or what I can do to recreate health in my body, and her attitude towards me, as a patient willing to do whatever I needed to do, to get well was atrocious!


I've been reading much more about ME & the groups & support that is available, and I'm going to start using my skills and knowledge to create more awareness and pressure on the medical system to provide care for those of us who experience these debilitating symptoms. 

The Hospital Appointment...

so a little while ago I went back to my GP and said, please help me, I've been diagnosed with a chronic illness, which prevents me functioning in every part of my life, and to date all I've been provided with is 12 weeks CBT (Cognitive Behavioural Therapy).  So they sent a letter requesting another appointment with the consultant at the Royal Free.  (Dr Gabrielle Murphy)

I had been scheduled to see her again in October- their standard, we see our patients regularly appointment (Once per year).

I have been looking forward to the appointment for some time, although admittedly the evening before and day of the appointment I was nervous about it.  I looked for the letter to check the times etc of the appointment, but couldn't find it.  (I'm usually a person who is organised but I simply cannot do that at the moment, it's as much as I can do to open letters and read them, putting dates into my diary).  I also sought the results of my blood test that they originally did, but was unable to find them either.

I figured they'd have the results on file, and was fairly sure I'd written the correct time in my diary.

I arrived at the hospital at 3.25pm, reported to reception that I had an appointment with Dr Gabrielle Murphy, I was informed that they no longer used that clinic, and that I would need to go down to ICDC on the ground floor.  I asked for directions to get there, when I got to the ground floor there was no mention of ICDC on the big sign with all of the departments, so I asked the main reception.  Oh, the "Ian Charleson Day Centre, you mean?"  "I guess so", I replied.  I was given further, more accurate instructions and found the "ICDC".

I reported to reception, saying I had an appointment at 3.30pm with Dr Gabrielle Murphy, "take a seat" was the response.  "Um, do you not want to take my name, so that she knows I'm here?" I was somewhat flustered by the off the cuff "take a seat".

"No, they don't have a reception service, so you just take a seat and they will come out to see you."
so I took a seat...

And waited.  My body was in pain, extremely uncomfortable, and I was extremely fatigued (Not surprising considering I've been diagnosed with Chronic Fatigue Syndrome/ME).
I waited.

After 20 minutes I returned to the reception, smiled at the guys working inside, and asked politely if there was a telephone number for the fatigue clinic, as I was still waiting for my 3.30pm appointment, and it was now 3.50pm.  A helpful gentlemen said, "I'll go and speak to her, and make sure that she knows you are here."

Excellent, I thought, now at least I can be sure that she knows I've arrived, a few minutes later the nice gentleman returned from further up the corridor, saying that he had spoken to her, and that she knew I was here.

Even better, I thought, now I don't have to worry, I just have to be patient, even though it is quite distressing having to sit here, because of the physical pain and discomfort I was experiencing.

Shortly after the nice gentleman confirmed I was in the right place, and that the consultant knew I was waiting I had to re-arrange myself to be more comfortable.  I went with sitting on the floor, with my head leaning against the chair, with my coat over my eyes to block out the light.  I must have dozed there for a while, half asleep.

A woman said "Are you ok there?"  I looked up, bleary eyed, um yes thanks, I'm just very tired and waiting for an appointment, I was told the consultant knows I am waiting for her.
I felt embarrassed that I was sitting on the floor and awkward.  I told the woman who I was waiting for.

I nestled back into my comfortable position, resigned to wait until the consultant was ready to see me.  The time was now 4.25pm.

The nice woman came back a few minutes later, and explained that Dr Gabrielle Murphy was in clinic 6 upstairs, and that I would need to go up to see her.

I cried.  I'd been waiting for an hour, in pain and discomfort, having asked to confirm that I was indeed in the correct place, and now I was being told that I wasn't.  That the appointment I'd waited weeks to get, I was now over an hour late for, and that I had to now walk further to get to see the consultant.

The nice woman didn't know what to do.  I explained that I was feeling a little over emotional, and how distressed I was that I'd waited so long for the appointment, to be waiting for an hour before being told I was in the wrong place.  She gave me directions to get to clinic 6 that were shorter than returning to the main reception.  She asked whether I would be ok.  "yes, thank you for your help" I responded, grateful to her that she had stopped to ask about my welfare, and grateful that finally, I was going to be in the correct place.

I arrived at Clinic 6 reception, explained the situation.  "Oh yes, take a seat, she'll be with you shortly".  I took a seat.

Around 4.45pm Dr Gabrielle Murphy approached me, I expected a "Hello", or some kind of greeting "Are you Claire Boyles?"  "Yes", I smiled, relieved that I was finally able to have my appointment.  I never received any greeting from her, formal, or otherwise.

The next 5 minutes involved Dr Gabrielle Murphy telling me that it was my fault that I was waiting so long, because if I'd brought the letter with me, it wouldn't have happened.

I pointed out that no member of staff had ever asked to see my letter, and that I had been unable to find it that morning.  One of the most distressing symptoms of CFS/ME for me is being confused easily, not bringing a letter is a direct result of that.

She started reading through my file "I have a letter here from your GP saying that you told them that you're unhappy with our service that we've provided you".
"No, that's not what I said to my GP, what I said to my GP is that I have been diagnosed with a chronic illness which affects every area of my life, and my ability to function and all I've been provided with is 12 weeks of CBT, which while it was useful and provided support emotionally and mentally, has had no significant effect on my physical symptoms.  What I would like is support to understand how I can begin to recover, and create health in my body"

She continued to look through my file... "Well you say CBT wasn't any use for you, there is nothing else we can do for you."

I was in shock.

She continued to say that, graded exercise therapy may have been more suited to me, and that's what Brian the consultant had recommended at the time.

I explained that, at the time I had been doing exercise, and from how graded exercise therapy was explained to me, I didn't see how it differed from what I was already doing.

She read bits & pieces out from my notes, at one point asked why I hadn't attended sessions of therapy.  "I was too ill to go I guess on the day"


I ran out of energy writing this, and had to stop at this point, I haven't had the energy/heart to return to it yet, but decided if I left it any longer, it probably wouldn't get published at all.  It's important to me to publish my blog posts around the time they were written. 


I will add the following, to summarise my visit: 


She barely made eye contact with me, did not assess my symptoms at all (the last time this was done was the initial appointment).

She told me that should couldn't help me, because funding was restricted to one choice of therapy only, and I'd chosen CBT.   And that she couldn't make any exceptions, because if I told anyone in the fatigue community, then everyone would want a 2nd course of treatment...

I asked, if money was no object, what course of treatment would you recommend, her response "Graded Exercise Therapy".

When I asked if the system didn't allow for providing the treatment, how could I go about changing the system?   "Write to Cameron, or Lansley, I think that's his name, he's the Minister for Health".

I was shocked.

After a further few minutes with her head buried in my file, and my looking down at the table, in an attempt to "keep it together" emotionally, I looked up at her, and made a gesture as if to say "What now? I'm at a loss for words".

She then started saying that maybe, if she brought it to the team with the angle of having had the wrong therapy, maybe then I could get graded exercise therapy.

But, if I do this, "You have to promise not to tell anyone within the fatigue community" she said.

"I don't know anyone within the fatigue community"

She agreed to bring it to the team.

I asked her to pass on my apologies to the CBT therapist I'd been seeing, that I'd missed my appointments.

"They don't take things personally you know."

"Yes, but if you could please pass on my apologies to her when you see here, I would appreciate it."

She scribbled a note on the file.

I thanked her for seeing me, despite it being an hour later than our scheduled time.

I left, in shock, in pain, in emotional turmoil.

Stupid People!!

Yesterday I cried.

I cry most days, the slightest little thing will set me off, I'm not sure if my relationship will survive at this point.  A man who was madly in love with me is now distant, and is not sure what he wants any more.

I get angry, I get irritable, I cry, I feel suicidal.  All things I experience due to my illness.  It's hard for other people to be around.

Yesterday I cried, in frustration at the "stupid people", the people who tell me, if I only were to think positively, all my physical symptoms would just disappear....

The reason why I'm so ill, is that for years my "positive thoughts" kept me going, I didn't rest when my body needed to rest, I told myself "I'm ok, I can do this".

Today I'm honest, realistic.  I have stopped making myself do things that cause stress and pain to my body.  (I still do some things, if they are of benefit to me emotionally).

Like last week, it was my boyfriends' Birthday, we went to Alton Towers.  I rode on rollercoasters, I laughed, and laughed & screamed.  In order to be able to do that I had to get assistance, I can't queue, I need to sit down, I can't stand for longer than a minute without it being extremely painful.
The energy it took to ride on rollercoasters, you could argue would have been better spent on other things, but I believe that if I don't have SOME enjoyment in life, I will experience even more of the negative emotional and mental symptoms of M.E.

Those are not things that I relish, not one little bit.

It's horrible to be judged.  It's horrible to  be misunderstood.  A "friend" recently told me that the reason they'd become distant with me, is that they were fed up hearing that I was tired all the time.  I cried, I sobbed my heart out at that one.   I hope that she never gets to experience an illness like this.

When I'm not ill, I am extremely active, speak publicly to business owners, write in depth blogs about business development, marketing, social media, psychology of sales, building relationships.  When I'm not ill, I go to embodiment dance workshops and dance like no one is watching, do yoga for an hour a day, go to lots of networking meetings, go out to catch up with friends, do one to one coaching to clients globally.

My illness is what prevents me doing these things, not my mindset.

what is being ill like for me today?

Today I woke up, about 8 hours after I went to sleep.  I was groggy for a little bit, takes me from half an hour to an hour for me to be fully awake.

then I went to the bathroom, brushed my teeth etc, put on the kettle, made a cup of cadarmom and fennel tea. 

Then I went back to bed, got onto my laptop.

My laptop is what keeps me sane.  I connect with social media, I facebook, I tweet I read blog posts, I chat with people on Skype. 

I usually get distracted, start doing one thing, end up doing something completely different.  But that's how my illness effects my mind, concentration, focus, these are things that are often beyond my grasp.

I started doing a bit of washing up mid morning, had a phone call with a friend around 11.30am, so used it to motivate myself to do some gentle yoga- getting it done before the call.  I did that for 20 mins, lit my incense and candle and wafted some burning sage over me, whispering "I love you" into the sage.
The American Indians believed that you could talk to it- ask it what you wanted it to do, lit it, then the smoke would carry that energy & do what you had asked it.

There's been studies of how water molecules change depending on what words are spoken to them, so hey it if works for water, it might work for smoke too :)

after I had my call I started preparing lunch.  Yesterdays dishes still undone- because by the time I cook lunch/dinner I have no energy left for dishes.
I am grateful for what my OT calls my "Perching stool", because it means that I can prepare food at the kitchen counter, and watch over pots as they're cooking without standing.  Standing is incredibly draining and painful, I can't do it for too long.

as I was cooking I felt faint, weak, my arms and hands were shaking, I had to go and lie back down, I managed to get most of the cooking done so it could be left on a low simmer for a few hours. 

I wanted to get back to social media stuff, writing about coaching, and business stuff marketing, and branding etc, my passions but I couldn't.

I felt sleepy, but was unable to sleep, that half awake, half asleep state. 

my dog still hadn't been walked yet and it was 3pm :(

I had 3 hours of being able to do nothing except watch silly tv shows, at least I got a few laughs. 

Then I went to pick up my bf from the train station, walking to the car was hard work, I brought my dog with me, so at least she got out & got some fresh air and a change of scenery.  she's a brilliant dog, but I feel guilty  that I don't give her what she needs.

I cooked and ate, I brushed my hair at one point, but didn't have the energy to shower & wash it, as I had planned.

Oh, did I mention that throughout the whole day I experienced pain and aches in my muscles and my bones, and a constant headache?  That lifting my arms to put ingredients into the pot that I was cooking lunch in was difficult, that I had to rest every few seconds?

Today was not my worst days....