Fibromyalgia, CFS/ME: Please Don’t Judge Us

In Blog by Alyssa Reid1 Comment

A few weeks ago I was speaking with the  husband of a good friend who has CFS and fibromyalgia. We we were chatting about my decision to go off all my medications – from anti-depressants to pain relief.  And he said to me, ‘I wish you would talk to Jane about going off her meds, I hate that she’s on them’.

I thought, ‘Wow. This guy is judging his wife and her choices to attempt to feel better, meanwhile, he has ZERO clue as to what she is going through’.

Everybody is Unique

I gave this some thought before I responded.  Thinking about my own journey and knowing so many others going through a similar situation…where if we shake, we rattle with all the meds we take. I know not only how delicate a subject this can be, but also how every person’s experiences are unique.

My response was this, ‘I think that when we reach the point of desperation…where we are so exhausted from poor sleep, pain, fatigue, brain fog, anxiety and depression, we are willing to try everything and anything to get some relief.  Ultimately, nobody will understand what another person is experiencing. Have knowledge, perhaps, but innate understanding?  Well, it’s impossible. Jane simply wants to feel better’.

In fact, I wrote a blog called ‘Nobody Understands My CFS/ME Fibromyalgia’ looking into this as a whole.

I went on to say that we all react to medications differently.  That we are desperate to claw back as much of our lives as we possibly can – and if medications allow us to do that, or at least provide the promise of doing that, then we try them. I also added that I certainly understood his concerns. It seems that medications certainly can be a double-edged sword in regards to what they help – and all the nasty side effects that come with them.

Ultimately, only we know whether or not a medication is helping us – albeit when it comes to mental health issues, in many cases it takes a friend or spouse/partner to point out that we have taken a nosedive and help is needed.

Incomparable

Perhaps it is a bit like comparing childbirth for women.  Every woman experiences childbirth uniquely.  Some women can pop a baby out, no gas, no epidurals and find the experience not a huge issue and they are happy to go through it again…whilst others find it so traumatic and painful that they choose never to have another child. Everybody is different.

Or perhaps this also has to do with invisible illness as well.  When we can physically see an area on a person’s body that has been affected (such as a bad burn), we immediately think, ‘Wow, that looks SO painful’.

But when someone has an invisible illness, we simply cannot identify what the person is going through based on our own experiences of pain etc. Of course, these are my own thoughts – please feel to comment! The whole, ‘But you look good/fine’ scenario almost always pops up.  (Amazing what a bit of make-up and a smile can do…).

Track Where We’re At

I think that this is one of the many reasons where our FibroMapp App and ProHealth Tracker App (free) really helps so many people.  These apps are designed to track our pain, sleep, fatigue, mood, other symptoms and more – but also have a journal.

Being able to track what is going on for us on a daily basis, I fully believe is CRITICAL.

I know for myself (and pretty much everyone else I am in touch with who has these conditions), in having a myriad of symptoms and co-existing conditions (over 200 in fact!), it is like living life on a roller coaster.

And in many cases, as these symptoms wax and wane, from day to day (and hour to hour) it is difficult to actually see the overall picture as to whether or not medications (and supplements) are helping (or indeed hindering) us. By tracking, over time we are able to build a solid picture of what is working -or not.

All Meds and Supplements Work Differently

Firstly, everybody is different in regards to how they react to medications and supplements.

Secondly, some medications  and supplements work almost immediately (ie for pain, IBS, indigestion and heartburn), whilst others take their time to work their magic (or not) in our system.

I don’t know about you, but for myself, take a headache for example – all of a sudden, after taking some relief for one, I realize (sometimes hours later) that the headache has lessened – or completely disappeared. It takes a while to clue in, that’s for sure! But when I do clue in, I know that the medication (or supplement – magnesium really helps headaches and migraines as well as sleep, muscle and joint pain and much more) has worked it’ magic. Of course, if it hasn’t worked it’s magic, I notice immediately!!!

So, ultimately, I know for a fact that these things do work for me (most of the time).

But when it comes to things like sleep, fatigue, mood and other pain I experience on a daily basis, the change can be extremely subtle and over time.  And it is for these reasons that I track on my app so that not only can I monitor the situation through the reports the app creates, but I also have the ability to easily go through the collated data with my doctor, should I wish.

Knowing Our Bodies and Our Patterns

I always find it rather incredible how out of tune I am with my body. Something that I exist within and know innately, but a lot of time, I find I am completely out of sync with myself.

A good example of this is eating.  I eat when I am stressed, happy, in pain – and well, you name it. It is my go to.

However, I am just starting to understand not only being aware of my emotions and pain and the correlation to eating, but also being able to judge the difference between actually being hungry -vs putting food in my mouth ‘just because’. (A great book that has helped me immensely in regards to this is called Intuitive Eating).

And a few days ago at a medical assessment, when I was asked how my mood was in regards to depression and anxiety, I thought that all things considered, I was doing rather well.  It wasn’t until my hubby said, ‘I actually think you are really quite low’. (Whaaaat?!)

Sure enough, I hadn’t looked at my app report in the past few weeks, and yep, there was definitely an increase in anxiety and depression plain to see and my journals also reflected this.

Was I willing to go back on anti-depressants? Nope.  Not yet. The weight gain, the suicidal thoughts and other weird mental stuff that they caused, wasn’t worth it for me.

However, that doesn’t mean I don’t have the tools available to do something about it!  Meditating, practising the Attitude of Gratitude, focusing on positive stuff and being thankful for all the AMAZING things and people in my life, not to mention watching some funny movies and TV shows – and getting in some good laughs is my plan to turn myself around.

I also determined that my pain levels had increased and I was pretty much in a flare-up for the past few months as well.  Of course, all of this affects our sleep, mental health and so much more.

Of course, all hubby (and anyone else) could see was that my mood wasn’t brilliant. He couldn’t see the pain, the sleeplessness (when hubby’s head hits the pillow he is out like a light until he wakes up the next day…ohhhh the jealousy!).  With illnesses such as fibromyalgia and CFS/ME – there is such a huge amount of stuff going on for us.

*Please note my husband is incredibly loving, kind, compassionate and supportive and is very unjudgemental – this was simply a comment to his observation of his experience of me living my experience!

Getting the Balance Right

As with everything in life, it is all about balance. Ultimately, this means being aware of our bodies and patterns, what works and what doesn’t and finding the right ‘fit’ in regards to our medications and supplements.

It also means that nobody will truly understand you and what you are going through in regards to the ups and downs along the way.

I think that ultimately, being in tune with our bodies, knowing what is indeed making a difference for us – positively and negatively -is imperative for our overall health.

When someone judges us, they simply have no comprehension of our personal experiences.  They simply can’t.  Knowledge of pain, fatigue and everything else?  Yes.  But that’s as far as it can ever go.  Ever.

Suck It and See…

In many cases, it is a ‘suck it and see; situation when it comes to trying medications, supplements and alternative options for our health.  It’s all about trial and error. And I think that is a good thing – we MUST try different things to find out if we gain any relief.  If we don’t, to me that means we have given up. We must never, ever give up.  It is about finding the right balance for ourselves, whatever that might be – and however we may be able to attain it.

Unfortunately, this comes with the ups and downs (not to mention the expense in many cases) of trying different things.  There is no ‘one size fits all’ situation here!  We’re all different!

I fully believe that there are many things that we can do in order to gain a better quality of life. Even if that just means having a more positive outlook on life.

And it is important to understand our bodies, our patterns and gain more control and understanding of all we do – whether it is medications and supplements (working and not), to pacing ourselves, eating healthier and gaining a better quality of life as best as is  possible.

When someone makes a judgemental comment to us, I think it is important to thank them for their concerns and their views and appreciate their input, however, you are doing the best you can in finding what works best for you….and that you are an ongoing work in progress!

In Conclusion

At the end of the day, it is our bodies – and our lives!  Although others may be able to see changes in us (positive and negative alike), ultimately, it is up to us to assess the situation regarding the different things we are doing – from medications to exercise and everything in between – in order to gauge what is working for us – and what isn’t.

Equally, it is important to know that what works for one person might not work for the next -nor can any of us truly understand what the other person is going through with their experiences of pain, fatigue, mood etc.

So!  Whether it is fibromyalgia, CFS/ME or indeed any illness – invisible or not – please don’t judge us!  Most of us are doing the best we can.  Honest!


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