fragmented.ME …
illness & health ...

self care & ME …

Self care comes in many forms and will not generally concentrate around the basics of care. In the generally healthy individual it is usually more about extra activities of care, like me time, beauty treatments, alone time, yoga, mindfulness, exercise, jogging, cafe with the girls, pub with the boys, a night out, romantic dinners, shopping, and other kinds of activities that re-create you.

However, when you get chronically sick you actually begin to see self care and health in an entirely different way than you previously did.

For instance, at one time ‘me time’ might have been a yoga / mindfulness class away from the children or family life. Whereas, when you get poorly with ME most of your time is spent alone as time away from others.

Plus, I can honestly say that most of my time is also spent in a meditative state. It is the only way I can get through a day of uncontrolled pain and never ending boredom and loneliness.

As well, and because I have been sick for so long and gone from being mildly unwell to being severely unwell, my self care has gone through an evolution of types of self care and of levels of importance too.

In the blog post below I will discuss briefly my self care evolution and then in more detail I will look at seven aspects of self care that I now find really useful and probably couldn’t get by, as well as I do, if I didn’t practice them.

. . . self care . . .
. . . an act of care towards oneself by oneself   . . .

self care & ME …

It is important to remember that this is being written by someone with severe ME and so the aspects covered are things that are tried and tested and have evolved over 36 years of being poorly.

definitions …

First, let’s take a look at how others define ‘self care’:

self care:
the practice of taking action to preserve or improve one’s own health. (*autonomy in self-care and in self-care administration)
the practice of taking an active role in protecting one’s own well-being and happiness, in particular during periods of stress. (*expressing oneself is an essential form of self-care)

Wikipedia : self care:
Self care is the individual practise of health management without the aid of a medical professional. In health care, self-care is any human regulatory function which is under individual control, deliberate and self-initiated, for the purpose of the maintenance of health and wellbeing.

Given those descriptions then, we all need to have self care and a plan that allows and aids health and wellbeing. However, self-care when you are sick should include ensuring you have the right, and good quality, medical care as well

self care …

As discussed above I have been unwell for a very long time now.  In line with this, I would like to discuss how I see self care from this standpoint as well as briefly touching on if / when I was well. I will also allude to some of the self care practices I had prior to becoming sick, when I was mild / moderate rather than severe.

Exercise has always been important to me and definitely what I would have thought I’d always class as part of my personal self care kit. As a girl I was in the rounders and netball teams at school. I also ran for the school in the 100m and the relay and often won too. I absolutely loved physical education at school and when I left school I didn’t suddenly become a ‘coach potato’. I loved going out and dancing all night. I did my own ‘Jane Fonda’ aerobics daily and actually hated my rest days off. I also went swimming several times a week and I would walk everywhere.

I also liked to get my very thin pale eye lashes tinted as part of my beauty care. I have never really been a makeup girl and having my eye lashes tinted was enough to mean I didn’t have wear any makeup. And I’m guessing in the era we are in now that would equate to having false eyelashes or eyelash extensions.

I loved clothes and clothes shopping.

as I mentioned above, I walked everywhere and when my two younger sisters couldn’t wait to learn to drive and get cars I had no desire at all. What for? I had two perfectly good legs. I would go out in Manchester for the night and walk over 15 miles home without even flinching.

I was active and alive and so self care came in the form of enjoying my life and being alive.

However, over time, since becoming sick, I have had to change and evolve my ideas of self care.

self care evolution …

Over the years, as I have gotten sicker from the illness that started in 1984 when I was only 22 years old, my activity levels and self care has changed.

Sometimes dramatically.

Sometimes reluctantly.

Often times out of sheer desperation.

But ultimately this has always worked out for the better and for my benefit, even if I didn’t realise it at the time.

7 aspects of self care …

In line with the above, I have chosen to share my seven most used and treasured aspects of self care with you. I do also have my blog article, ‘my top TEN toolkit …’, which may overlap with some of the areas discussed below. But mostly, I will aim to for them to complement one another rather than overlap.

#1 listen to your body …

For me, when you have any illness, but especially when you have ME, then this aspect has to be the wisest and greatest act of self care and self love that you can offer to your poorly self.

To listen kindly to the inner workings of your body and what it might be telling you is wisdom indeed. And then to complete that kindness by heeding what your body is telling you is a wonderful act of self love.

Your body, it knows, it has an intelligence you ought to respect.

Yet, for one reason or another, many of us don’t.

Along our formative years we’ve been taught that our innate internal workings are to be questioned and doubted. And to also put ourselves last in the queue for self love, care, and acceptance.

This has been especially true in my own personal case. For one reason or another, I have questioned and doubted what my innate intelligence was telling me regarding my illness and how to be with it. Usually, to the detriment of my health. And I will always find myself last in the queue when it comes to self love, self care, self acceptance and self worth.

Time and time again, I have heard so many people with ME saying things like:

I knew I shouldn’t have been doing it [anything that involves cognitive or physical extra effort] but for some reason I couldn’t stop until I’d finished [adrenaline] …
I could feel myself getting sicker inside each time I did things …
I might have had the mind / physical ability to do it and push myself but I also knew and could feel that inside I was getter much sicker from the pushing
I just wanted to be well, so I pretended I was …
I knew I should have been resting, I just had to get it done (it was expected of me / there was no one else to do it) …

Yet, for whatever reasons, we don’t heed the cries of our bodies.

It’s as if deep inside we already know the answers but we simply cannot override whatever stops us and make our self care a priority.

how …

I have found that the only way I can do this for myself, before and not after I get sick, is to treat myself as a third party, like a special friend or a child.

Doing this enables me to use my inner wisdom to listen with my ears, yet I can also become an observer, in order to view myself separately and ultimately treat myself as though I were a child or a dear close friend.

Doing this means that I am able to treat myself with a far more accepting and kindly attitude, but I also have the benefit of my internal wisdom and knowings to do the actual right thing for myself.

It’s not easy to do. It takes practice because it’s not my natural way of being towards myself. I seem to expect more from myself than I do others. However, when I manage to this for myself then I always feel better, not only psychologically but physically too and in the long run my poorly body can only benefit from being treated this way.

#2 balance …

Balance is a biggie for me. Always has been and probably always will be.

Balance is often about enabling someone or something to remain upright and steady, so that they do not fall, and this can also be applied to ME. When I get out of balance I tend to fall. I fall emotionally and psychologically as well as physically too. So aiming to keep balance can keep me well in my mind and my body.

By nature, I’m not a very balanced person. I’m rather extreme in everything. In my head I feel alive, yet my body feels poorly. I also have this personality trait that has to finish, completely, what I’m doing before I will, or I should probably say can, stop. So trying to find balance has been difficult and I have fallen many times and still do fall.

how …

How though? How can I find and maintain balance when I am prone to overdoing it, giving more than I can, especially when my mind is alive.

Seven nice, but maybe not so easy, ways to find balance are:

  1. Turn it off: don’t spend too much time online or on your phone, and when you do spend time online make sure you have proper regular set breaks and holidays away from social media too.
  2. Say no: whatever it is, be it other people’s requests and demands or your own, learn to stop, assess, and say no when necessary. Funnily enough, I got the chance to practice this out today when the new clinician at my specialist headache clinic rang me and I ended up having to stop her mid sentence and say NO I do not have medication overuse and please don’t try to tell me I do when I’ve had daily headaches and pain for over 30 years and only started taken over the counter pain medications five years ago. Having to listen to this kind of barrage vis exhausting and so is having to stop someone and explain your reason for ‘no’. But remember, no is a complete sentence and explanations are mot always necessary. In some cases they are, but not always. Plus, often you are too sick to explain and ‘no’ has to be enough. I absolutely hated doing it myself. And in my example, I felt I had to because I really could not listen to another person talk about taking me off my pain medications.
  3. Pay attention: to your physical and mental health. Listen in carefully to your own mental chatter and your own physical signals and react to them with gentle kindness.
  4. Treat yourself: whatever makes you feel special, flowers chocolates, back to back ‘desperate housewives’, whatever it is, give yourself permission to enjoy those treats.
  5. Comfy and pretty pyjamas: if you don’t get dressed, like I don’t, then buy easy comfy PJs and change them everyday if you can. And find gorgeous cardigans or sweatshirts to wear with them; treat them like your clothes and find your own PJ style.
  6. Have fun: just because you are sick does not mean you can’t have fun; find ways to enjoy the life you have. It’s good to smile and laugh.
  7. Use the internet, but wisely: yes, use the internet to travel the world and to enjoy seeing he places you’d love to see in person but can’t do.
#3 pacing …

Action for ME in their Pacing for ME booklet describe pacing as a means of taking control of the balance of activity and rest to prevent post- exertional malaise [PEM]; and learning how to communicate to other people about the balance that usually works best for you. It’s very important to note that “activity” does not just mean physical activity.

On an advisory health level, pacing is something that everyone with ME needs to learn. It’s invaluable to achieving anything without making yourself more sick.

That said, it is the one thing I have struggled with forever. As I am sure many have. It’s so difficult to pull back when you have a desire and zest for life and living. That said, if you have ME and you don’t pull back and pace then you most certainly will make yourself sicker.

In my case, and with hindsight, I now realise this is because all the medical professionals I have seen so far, until the Yorkshire Fatigue Clinic, have all misunderstood the dysregulation involved in my ME and so until I am stable I cannot even begin to find my baseline in order to begin to pace.

how …

Tricky … and you need to be careful you are not dysregulated. In which case you will most certainly need help in order to stabilise. You can read my journey with this and other issues involved with my ME in ‘my healing journey …’ blog category.

As regards straight forward pacing, a simple formula is to do less than you think you can and if you still, or continually, wake with or get PEM then you are functioning above your baseline and you need to pull back a little until you no longer get PEM. Stick with that level of activity for a while and then add some more, and if you don’t get PEM stay at that level of activity for a period of time until adding a bit more … and so on until you find your baseline.

However, if you do get PEM pull back to your previous level and stabilise again. If you keep getting PEM when you increase your activity levels then you have now found your baseline, pull back and stay there.

From then onwards, be extremely cautious about increasing your activity beyond this baseline because it is ever so easy to cause a flare or a crash or even a worsening and permanent deteriorating of your baseline.

This baseline then becomes very closely tied into the above area of balance. Because you will need to be balanced in accepting your baseline and all its limitations in order to not make yourself sicker still.

#4 rest & relaxation + diet + activity management …
rest & relaxation …

This area too is tied up with pacing and balance. It is easy to think that you are resting when you can’t do anything and so you are laid in bed all the time. But all too often not doing anything or not being able to do anything is tied up with thoughts feelings and emotions, especially guilt. And these take away your peace and so mean that you are in fact not actually resting or relaxing. You are actually doing something.

diet …

Diet is a funny one.

Since becoming severe I have developed lots of allergies and dietary intolerances. The Yorkshire Fatigue Clinic are suggesting it could be a form of mast cell activation. The reality is that there are lots of foods that I can no longer eat and there are also food I can randomly eat and then not eat. Plus, I feel nauseous on a daily basis and if I overeat, which I do often, I can get PEM simply from that. So I have to be very careful in this regard.

And so the only thing I am going to suggest is to eat little and often and as healthily as you can. But, more than anything listen to your body.

activity management …

This is not pacing but can be linked to the pacing. Plus it is not just about physical movement neither.

So in my case it may be about doing a few steps regularly to go to the bathroom, and sometimes just a wander round the garden. Or using my brain to listen to an audio book, or even the birds singing.

Either way it all takes energy, energy I / you may not have and so can be very taxing on overall health and when my / your health is poor to start with then you don’t need another source taking from it.

Consequently, there are going to be days when we are unable to get out of bed and that too is ok.

Furthermore, being very severe makes this extremely hard to grapple with. Because when you’re severe with ME you can’t even get to the bathroom never mind have activity management, not even some days.

In all of theses scenarios you really need to be able to give yourself permission. Allow yourself to be unwell and allow yourself the rest that will, even if it’s slowly, bring you balance and maybe even some recovery.

how …
rest & relaxation …

If you have read any of my fortnightly catch up … Blog posts, or my healing journey … (I know what a name I couldn’t think of anything else more appropriate to call it) blog posts, then you will be aware that I wake up every single day in pain, severe head pain and often migraines and so I can’t even move until I’ve taken my pain medication and I also do my meditation whilst the pain medication is working.

I count both my pain medication and my meditation as part of my rest & relaxation because without either one of them my day would never get started. It would simply be a day filled with pain, which would in effect use any energy I might have to use on self care.

As well, I prescribe for myself a daily amount of time where I consciously rest and be mindful about my breathing quality on top of my morning medication meditation.

I call this time my conscious active rest and restore. I don’t feel much better for it on an outward physical level but I know deep down inside it is changing things on a cellular level. I also do feel that I am building resilience.

diet …

I am going to reiterate what I said above …

And so the only thing I am going to suggest is to eat little and often and as healthily as you can. But, more than anything listen to your body.

activity management …

For me, this is simply about listening to my body and giving it what it needs.

However, if you are mild or moderate it might be useful to use the printout forms in the pacing booklet from Action for ME (link above).

#5 managing relapses …

Relapses are the saddest and most difficult part of ME.

You can wake one day and think you’re ok, especially when you are mild or moderate, and you will think that today’s the day the catch up.

This idea and way of being, with ME, couldn’t be any more wrong. Experience has shown me that this is the time when you need to stay within your limits in order to not cause a relapse.

But, because we are always so behind with everything as a result of always being sick, and there’s always something to be done, the tendency is to ignore that knowledge, even if you know it deep inside, and to plough ahead.

Once you have triggered that adrenaline in order to complete your task then you don’t even realise when you’ve reached your limit on when you’ve gone over it too.

Until the next day. When it all hits.

worse still, when it does hit there is nothing how long it’s gonna stay neither.

how …

For myself, and others in the severe category, relapses are often how we live. I don’t know when this flare started but I have become used to living in relapse. I have been here at least five years now.

My biggest dilemma at the moment are about knowing when to go down stairs and went to stay completely bed.

I know I’ve said it on lots of occasions in this article, and in others as well, but the best thing to do is to listen to your body. It will give you signals of whether you need to rest, move, sleep, have company, eat, everything it will give a signal just listen for it and heed it.

Your body will thank you …

#6 personal care …

I chose this aspect of self care as one of my seven because right now it’s what I am struggling with the most.

I do believe in reality that personal care, in and of itself, isn’t an aspect of self care. But becomes such when you get this poorly.

I would class personal care a basic human right. However, it is sadly a basic human right that some of us do not have access to.

Not being able to take care of my own personal self care needs has been devastating for me. I don’t want to discuss personal care in much detail here, suffice to say it has really made me question how much lower this illness is going to take me.

how …

I think this has been the hardest aspect for me to deal with. The fact that I can’t have a bath when I want, I can’t wash my hair when I want, I can’t even brush my teeth or go to the toilet when I actually want to.

It has been quite life changing and I am in the process of getting a care package, which I really would rather not have but I don’t have a choice now.

So, I would say when / if you ever get to this point, I sincerely hope you don’t, but if you do please allow yourself plenty of grieving time. If this need is not thrown upon you, then try to do it in stages so that you can acclimatise yourself. As you get sicker, let go in stages don’t hang on to the end and lose it all it one go.

That is simply too much and too hard.

Be easy … Be kind …

#7 desired self care …

Now we get to the special part because it will be about my dreams, desires, wants and hopes for the future and there’s nothing wrong with that neither.

I have never let go of the dreams I have, and the want and the hoped for the future. I will often lay here, in bed, I’m just plan what I’m going to do when I am well.

I have a ‘lottery winnings spending list’ and I also have a ‘what I am going to when I am well’ list. Both get updated regularly.

Both get updated regularly.

I believe little things like this I will keep me sane, keep me alive, and keep me going through this never ending illness.

… hope …
… a feeling of expectation and desire …
… for a particular thing to happen …

in summary & in conclusion …

I think we can safely say that if we have ME and we manage to get our baseline right and pace from that start point of becoming ill then most aspects of self care are covered. However, who does this ever happen for? It takes years for some of us to be diagnosed. It becomes glaringly obvious after the event what should have been and that overdoing makes you sicker, sometimes permanently.

So, the most important aspect of self care is to listen in to your body signals. Listen and really heed what your innermost workings are telling you in every single aspect.

a personal concluding note …

above and beyond everything else, please listen to what your body is telling you …

Please feel free to contact me to share your outcomes or with any questions you may have.

 fragmented.ME xXx

My birth name is Denise, but I’m know as Bella to those who love me. I have a first class honours degree in education & psychology and a strong passion to keep learning and educating others ... I have severe ME/CFS and lots of other chronic illnesses and I started this blog as an expansion to my instagram page, where I advocate for chronic illness. I am married and have two grown up boys, or should I say young men. I have three gorgeous grandchildren, one boy and two girls. And despite being chronically sick and housebound I am mostly happy. 🥰