Diary Day 104: Talking About ME Symptoms, Gap in NHS Care, Grief, Cancer, Carer, What An ME Crash Feels Like Post 1

This weekend is an anniversary. It’s the anniversary of 2 years since I went into a steep decline in my functioning and symptoms that people with ME call a ‘crash.’  

I went from being a moderate ME patient to a severe ME patient in the space of about a month. 

In my case, the crash happened because during the time that my mother was dying of Cancer (CA) all the rules that I follow to maintain my health flew out of the window.

After 4 months during she was dying and then pass away, I was heading towards a crash which has taken the 2 years since to recover from.

Yes. An entire 2 years

The crash has completely changed me and also changed my attitude towards my ME.

It has been the most significant situation which has forced me to look at having ME differently and treat it differently also.

I’m writing this today with the intention that if anyone else identifies with it, it may help them too. 

Before I start I need to say that anyone who has lost someone to CA will appreciate it when I say that it is an illness which brings about specific stressors. In the case of my mother, the time that she was told she was dying to the time she actually died, was one of huge emotional impact for her and the rest of my family, of course, it would be.

But due to my proximity to my father and mother, I ended up being their carer also.

Many problems happened and we lurched from one crisis to another until the point she actually died. I was on an emotional and physical roller coaster for the better part of 6 months.

Any rules I had to follow to remain stable – the ones I’d learned prior to this, that is –  flew completely out of the window. After she died there was a period of time afterwards that the emotional and physical roller coaster continued which I couldn’t get off.

The crash was something I see now as an inevitable outcome of all of these things.

A well person would have suffered emotionally and physically from going through that situation, but for someone with ME this situation is a BIG red flag.

I have been totally shocked by how long it has taken to recover even half of the functioning I had before this happened.

Having inched my way back towards recovery, it has terrified me enough to talk about it openly here.

So, what lead up to it? 

Being a carer is not unusual for someone with ME. In the CFSME Clinic I attended they said that many people with ME end up being carers. 

This is because many people with moderate ME do not have the full time commitments in terms of work or lifestyle that means they are ‘free’ to slip into a caring role.

Unless you make a conscious choice to be a carer, this is often how it happens. You are ‘available’ or nearby when others are at work, or have family commitments or are on holiday or are out playing football at weekends.

In my case, my ‘availability’ was both my advantage but also my Achilles heel. At the point when my mother and father went into their meltdown due to her diagnosis, I wanted to be there for them and to a certain extent could be, because I was in the ESA Support Group.

In the ESA regulations, it says that being a carer is exempt from the rules about working whilst ill, that would otherwise indicate you are fit to work. i.e. if you are considered too unwell to work but are working as a carer, that’s not considered work. Says it all really 😉 

Unfortunately no-one had a crystal ball at the time and anyway, when you go through something for the first time you don’t know what’s coming. I certainly didn’t.

I didn’t know that the situation would be like having a full time, 24-7 job. I ended up doing things like liaising with social services because carers hadn’t turned up, doing the washing  and cleaning, manning the home phone and all the communication in the family when she was in hospital and staying with my father so he wasn’t alone.

Of course I was running to and fro caring for my mother when she was at home and in hospital and the hospice she died in also. This level of physical activity I already knew was a red flag and my levels of exhaustion physically were wildly fluctuating as a result.

I expected that, I could see that was affecting me, I could see the cause and effect but before too long, I had spikes in my other ME symptoms also. Some of these were subtle and declined more slowly.

It was the composite effect of all of these things that sent me into my 2 year crash.

No care plan for people with ME in the community – no prognosis either 

Some of you might be reading this and thinking: “Well der? What did she expect???”

I would say to those people that standing back from this situation, it has entirely highlighted the gaps in current treatment for CFSME patients in the UK.

At that point in my illness trajectory, the treatment I’d received was in an NHS CFSME Clinic. I’d attended 1-1 sessions with a clinical psychologist which were conversations, not treatment and I’d also attended 4 sessions of a CFS Management Course at the same clinic before I crashed and couldn’t continue.

Throughout all of these encounters, not one person had given me a defined, detailed and targeted prognosis to explain to me what I could expect or what my level of ME symptoms indicated for me personally.

i.e. no-one said: “With ME there are often clusters of symptoms that occur at the same time. Whereas cause and effect is often difficult to determine, if you are experiencing spikes in your specific symptoms this is an indication that your symptoms are becoming out of control and these are the measures we will ensure that you take in order to reduce the risk of a more permanent decline in your functioning.”

No-one said: “We can see from monitoring your symptoms that you are at risk of a decline. We will liaise with your GP and suggest they refer you to the District Nursing services in your area, so that they can visit you at home  and advise.”

No-one said: “We’ve looked at the cluster of symptoms you are reporting and this indicates a diagnosis of moderate CFSME. From this position in the spectrum, we can advise certain lifestyle management techniques that will stabilize your symptoms and perhaps allow you more functioning. However if you do not manage these symptoms we also have to advise you that you can decline in functioning.”

No-one was looking after me in the medical professions to monitor my symptoms because there’s no care plan for people with ME when they are living in the community, whether they are in the care of a GP or an NHS ME Clinic – so at this point I was literally on my own. 

This gap in NHS care is extremely serious. It was serious for me at the time. Had I been monitored, this crash may have been averted. I lay the reasons for it entirely at the door of the medical services and the NHS NICE Guidelines for CFSME.

After all, if no-one tells you what to expect of your illness, how can you control it? You can’t.

I didn’t know enough at the time to know what to do. I did try to go home and rest but the situation was so immediate and pressing all the time that I didn’t have a break for weeks.

Also, brain fog doesn’t help when you are trying to describe your symptoms to people and why you can and can’t do things. I didn’t have the words or energy so I just complied with everything……:-(

Hobson’s Choice 

I’m not judging myself, by the way. It was the last time I’d see my mother alive. My emotions about that were paramount.

Except, as an ME patient, they shouldn’t have been……

What were the advance symptoms of The Crash – the red flags? 

Everything that someone with ME expects to feel and experience became progressively worse. Some were predictable, like the physical exhaustion I’d feel when I’d taken a journey to a hospital and back.

However other symptoms also became more pronounced:

Brain fog 

It became hard for me to recover from having conversations. The gaps in my mind and thinking became bigger and deeper and blanker.

Emotional lability 

Emotional lability is a long phrase that basically means strong, pronounced emotions often out of kilter with what’s going on.

In my case I cried at the drop of a hat at anything. I was literally on the verge of tears all the time. I didn’t recognise that this was a red flag either. I mistook stress for grief. This isn’t normal.

Wobbly on my feet 

I felt like the ground was wobbling below my feet, shaking like earthquakes. I’d stand up and have to grab something  to steady me or I’d fall over.

Malaise – feeling increasingly iller and iller 

I felt ill, really ill. Adrenaline was the energy that I was being fulled by and covered it up a lot of the time, but I felt ill and I knew it.

Adrenaline 

I’ve blogged before about enemy adrenaline. Stress produces adrenaline and I was under a lot of emotional and physical stress. My body was flooded with adrenaline. I lost about 2 stone in weight, for instance and I could feel my entire body jangling with nerves.

Infections – the ability to fight them off reduced 

I got an infection that wouldn’t heal – it lasted for over a month before it started healing and whilst it was going on, all my other ME symptoms declined dramatically. My mood worsened a lot during this infection too.

Worsening Mood

During the time I had this infection I could feel myself sliding towards a mood I’d never experienced before and never want to encounter again. Period. That’s where my fear comes from.

Women’s problems 

I started to bleed at the wrong times during the month, sometimes lightly, sometimes heavily. This is one of my ME symptoms.

Insomnia / sleep disruption 

Sleep became elusive. I’ve blogged about how I need to take a sleeping pill called Mirtazapine sometimes to regulate my ME symptoms via regulating my sleep. At this point however, I had nothing to help me with my sleep.

Mood / Grief / Brain Fog – they disrupted the normal grief process

My mood was understandably affected by the impending loss of my mother and then afterwards by the grief I experienced.

However – and this is the reason why I ended up in counselling for my emotional health  – ME affected my ability to process these emotions, experience them normally, work through them in an appropriate time scale or for them to in themselves not also affect the crash that I experienced.

Instead of grief I had a brain foggy blank. It went on for months. Months of nothing.

From moderate to severe ME in a month – grief and brain fog 

After someone close dies, the normal thing to do is to withdraw to experience your emotions.

There are reasons why people stop the clocks and close the curtains and aren’t seen in public for a long time when they are grieving. It’s because the emotions are deep and personal and you feel ultra-sensitive while it happens.

Because I have CFSME and I had already had a period of time beforehand that my overall symptoms were declining, by the time my mother died by body and mind had shut down completely as if it had crashed at the bottom of a long slope.

I did not and still in many ways have not processed all that happened in the way someone without ME would have done.

The Crash 

My  body and mind folded. I went from being able to leave the house to do the shopping, for instance, to being able to get up, get washed and dressed, make and eat my own food and then go back to bed again.

My mental and physical exhaustion was total and all encompassing.

I was also an emotional wreck from a place to the other side of brain fog – a place of beyond exhaustion.

Now for people reading this thinking from the perspective of a non-ill reaction, yes, being an emotional wreck is a normal part of life, it happens. However what I felt wasn’t like that.

My brain had gone. I became a complete recluse. I forgot everything. Where I’d felt and remembered people who were close to me, for instance, they disappeared, there was nothing in my mind at all. Sometimes I’d think “I must do this,” and I’d do it, but where anything else was – was nothing.

Each day I struggled against all pervasive cognitive and physical exhaustion. My legs and body were like lead. All I could do is stay glued to my home. That was all I could manage.

It was during this time that I started to address and work on what I needed to do to recover. It took about 10 months to start to see small differences.

This included taking sleeping pills to address my sleep and in the 2 years since my old life and self has disappeared and a new one has emerged from the ashes.

Slow recovery 

It’s taken a long, long time to recover. I cannot lie to you about that. What happened as a natural side-effect of the crash is that the demands that I used to make on myself and people used to make on me are no longer there.

These days, the idea of being a carer makes me say a big “NO.” I simply cannot risk it.

Many of my friends, the ones who were around before this happening, are no longer in my life any more.

This is interesting because before my crash I hadn’t realized that I was this social pivot – I was the talker, the texter, the emailer, the phone-caller, the communicator and the organiser.

During my crash I was incapable and I discovered, sometimes very painfully, that they didn’t reach out to me.

There are 3 friends left from beforehand and I am eternally thankful and certain that these are my real friends. The others were acquaintances, even the ones I thought were my best friends at the time.

To clarify also: I had no NHS care or social services input during this time. My Disability Rights Advocate  referred me to social services but they never returned the call or got in touch with me.

My GP saw me to prescribe medication.

I was referred back to the ME clinic and they started me on Graded Exercise Therapy because I couldn’t attend the clinic and do CBT – the other option I was offered and declined.

So everything you are about to read is through trial and error and a long period of learning and understanding how to recover from an ME crash.

What I do now to maintain my health 

Rest: I rest for long, long, long periods of time during the day. I have to.

Sleep: I never go out in the evenings, I’m always at home resting now and preparing for sleep. I take MTZ if I need to sleep.

Don’t take on anything more: I can’t do more. Sorry but I can’t. What’s going on in my life to remain well, takes up all my available energy.

Yes, I’ve changed: I’ve had to. If you are still here in it, then fantastic! If you aren’t, I’m sad about that, but you can’t come along for the next part of the ride.

Manage expectations: In the lack of NHS Care, I’ve accessed counselling.

This is a conversation once a week that helps identify where I’m going right, and where I’m going wrong. It helps me to adjust my thinking around keeping well regardless of what I was like before.

Self-care: I do a lot of this, baths, doing things I enjoy, thinking about good things, doing things I enjoy doing too. 🙂

Exercise appropriately: I go out for short walks every day, to keep my body as strong as it can be and to keep it as healthy as it can be.

Moved home: Counselling helped me recognise that my old home was unfit for habitation for someone who was already unwell. I was supported throughout the arduous and stressful task of finding my new home by my counsellor, when no-one in the Council, NHS ME Clinic, GP surgery and / or Social Services were doing.  They were asked to help, they didn’t.

Re-boot my life: This crash has rebooted my life totally. There was a before and an after. From now onwards I have to live my life according to the rules in order to remain well. It’s like my new home – white and clean. I have to decide what goes into it now and the criteria are different.

Signing off from this post……

The crash I went through was absolutely the worst period of health in my life. I went to many very difficult places over the last 2 years and I’ve learned more about how ME can affect everything about you than I ever knew beforehand.

It’s an emotional, cognitive and physical illness and I see it as a whole now.

I hope that by starting to talk openly about what I’ve been through it might help someone who is going through the same…

Where I’m at now is that I have enough energy and stability in my symptoms to enjoy the parts of my life that are left and to think about how to rebuild a new one. 

Copyright 2016, Lindy. 

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