A Mother’s Love – Part 8

****TRIGGER WARNING – This post contains details of my experience of obtaining an autoimmunity diagnosis and considering my own personal treatment options.  Please be aware of this when choosing to read, if this is a sensitive topic for you, you have medical trauma in your history, or you are going through a similar process yourself at the moment.

If you are struggling with your own experience of autoimmunity and are looking for support, The Wren Project offer free listening support for those living with an autoimmune condition.  You can find out how to access this service through their website https://www.wrenproject.org/

Please also note that all details contained herein are of my own experience, from my perspective, and my understanding of the options available to me at the time.  Anything written here is not medical guidance or advice, simply an account of my experience, from my own perspective.****

When I started this blog thread, it was initially my intention to tell my story in a linear way, from the beginning, right through to the present day, whilst also weaving some knowledge, theory, experience and strategies I have found useful into the mix.  I spent some time, plotting out the flow of the first year’s worth of posts and embarked on writing my introduction.

I should have known, right from the start, that this is not how it would play out, as it’s not how my mind works.  I followed that plan for a grand total of three instalments.

We are sold a story by society that progress looks like an efficient straight line, beginning, middle and end, preferably following an upwards trajectory, if we were to plot it all on a graph.  But in reality, very little of nature works this way.  It tends instead to be wiggly, a bit like my mind.  So, inevitably, I have side-quested.  But, from the feedback I have received, those diversions have provided comfort, hope, new understanding, and support to many readers who have followed along.

Healing too is a little like this, we cycle round to territory which feels familiar, and often fall into the trap of calling that going backwards.  When we examine the terrain however, we often discover that some new features have arrived since last we visited, which track the progress we have already made.  Cycling back is often a necessary part of the process, and allows us to make even further change.

So, today, knowing that I had wandered off-piste into territory which felt a little more interesting to me in recent months, I have cycled back to my original plan, and discovered that there is still much in there I would like to talk about.

Today I want to pose to you the question what happens when we stop trying to fix ourselves and start learning how to live with ourselves?

I have, at various points in my journey, believed that I have found ‘the thing’ which is going to make all the difference.  I have started a new protocol, or a new practice and I have experienced some temporary improvement in either my physical or mental health, and then I have rushed out into the world to share this new ‘miracle’ with my clients.  Months later though, I would find that symptoms would flare again, or something new would crop up, and the effectiveness of whatever ‘thing’ I had been doing would be minimised again.

You’d think off the back of that that I might just stop doing whatever the thing was, but unfortunately what I have tended to find, is that I have continued to my new ‘miracle’, along with all the other previously found ‘miracles’ like some sort of life-raft that is keeping me afloat.  I would make the assumption that these things had gotten me so far, but I must have missed a vital piece of information about what was at the root cause of my distress, and I now needed to find out what that was, and bolt on an extra thing to my floating tower of strategies, supplements and practices which I believed were keeping me somewhat buoyant.

Initially, in my mid-twenties it was yoga, massage, aromatherapy and reflexology to deal with chronic muscle tension.  I then layered it up with osteopathy.  I discovered through yoga just how busy my mind was when I invited my body to slow down, and how uncomfortable it was to ‘be with myself’, so added mindfulness into the mix, which in fairness at the time felt like it made things worse.  So, I tried meditation, all the types, and eventually alighted on a method which I found helped me to quieten that busy mind (during practice at least), which felt like a blessed relief, until another series of significant life stresses hit, and then it felt like trying to push back the incoming tide with a garden rake.  I layered up my symptoms with digestive issues, migraines, menstrual issues, and sleep disruption.  And then at the end of 2015, the prolonged stress and some current major changes in my businesses introduced me to the experience of burnout.  So, obviously I doubled down on the existing strategies and introduced a whole new diet and lifestyle overhaul.  This, in fairness, made me feel great, for a good few years.  I was the healthiest, strongest and fittest I had felt in my whole life.  I trained at least five times a week, and took up running (for fun).  Most of my previous symptoms either disappeared or significantly quieted enough for me to ignore them.

And then in 2019, I separated from my now ex-husband, and had to navigate the world of being a single parent, again, whilst also running a business, which I desperately needed to grow in order to be financially able to keep the family afloat.  And, you guessed it, there was another symptom flare.  So, off I went again to look for the information I was missing to make this permanently go away.  I ramped up the cold water swimming at this point, because I recognised how much of a positive impact it had on my mood and feelings of being able to cope.  I became a cold water junkie.

Then 2020.  We all know what happened.  I was a body therapist and trainee psychotherapist at the time.  I did have a small handful of psychotherapy clients, but the majority of my income came from working, hands-on, with people’s bodies.  The government frowned on this trade for approximately five months, and even then were reluctant to let people like me come back to practice as usual, so I had to scramble and find a way to keep the financial ship sailing.  That was actually when The Rambling Psychotherapist was birthed as a business, which is a bit of a silver lining really.  What I thought was going to be a long-term plan to transition slowly to being a psychotherapist, got sped up significantly.  I don’t need to tell you, that this was all just a little bit stressful.

And then, in the later part of the year, having returned to group exercise, a whole new set of physical symptoms made their presence known.  My body felt permanently weary, I was experiencing extreme pain, which moved around my body and seemed to have no discernible pattern to it.  I had to stop training, and then running, and eventually even the hill walking I so loved became inaccessible to me a lot of the time.  My mood plummeted, far, and fast.

I went to the doctors.  They didn’t know what was wrong.  I was referred to specialists.  The specialists narrowed down that I was ticking the boxes for an autoimmune condition, but for at least eighteen months swore that the pain I was experiencing was not caused by autoimmunity.  So, I did the inevitable; if the medics could not give me the answers, I’d consult the rest of the world.  So, I started the next round of searching.  All the while with my symptoms worsening.  I tried this supplement, and that detox protocol, and I entertained the idea that my symptoms might have been caused by Covid and followed several nutritional health protocols.  But it was all to minimum effect.  And I was desperate, so I kept going.

I did eventually get a diagnosis from the medics.  Their suspicions about autoimmunity turned out to be correct.  I remember the momentous day that I got my diagnosis.  I had attended the hospital for my quarterly monitoring appointment.  This time I was going to have an ultrasound scan, which I was hoping would yield some different results.

I was directed to the scanning room, covered in gel by the sonographer, and had various parts of my body scanned in the hunt for evidence to confirm the specialists suspicions.  And, after being handed an insufficient amount of paper towel to remove the remainder of the gel, I was then directed to the consultant’s office.  The pleasant chap that greeted me there, went through the regular questions, took a quick look at my scan results, told me there was no sign of what they were looking for, and was about to send me on me way, but stopped momentarily to ask me if I had any questions.

I pulled out my right wrist, and showed him the golf ball sized lump protruding from one of the bony bits of the joint, and then to a couple of much smaller lumps which appeared to be in or on the veins of my hand, and told him that this was new since last time I was checked.  I then asked, if he could explain what they were or if they were relevant to his investigation.  He paused.  He picked up the scan results again.  Looked at my wrist again.  And then back to the results.  “Hmm”, he said, “They don’t appear to have scanned this!  Shall we see if the ultrasound room is free?”

It was.  He applied yet more gel, he scanned the parts of my wrist I had indicated.  He asked me where else I was experiencing pain.  He then scanned the inside arch of my left foot.  Seemingly satisfied with what he was seeing, he looked up.  “You have rheumatoid arthritis!” he said.

My heart sank.

I had suspected all along that this may be what I was experiencing. My mother had the disease, and there is evidence to suggest that the propensity to develop an auto-immune disease is passed on genetically.  Some believe that you cannot develop an autoimmune disease at all if you have no family history of autoimmunity.  But I still very much wanted him to take his words back.

I knew enough about this illness to know that the outcomes were generally not good, that it was a progressively degenerative condition, and that standard treatment involved some heavy duty, toxic, pharmaceuticals, which could slow the progress of the disease, but at the same time cause issues in other organs and systems of the body which can dramatically impact your overall health and, over time shorten your life span.

The irony of it being my mum’s birthday that day (20^th November), was not lost on me.  It feels like every struggle I have battled with over the years can be traced back to her in some way, and this was just the latest evidence of the impact of the damaging relationship I had endured with her.  A mother’s love is really not always what it’s cracked up to be.

The consultant immediately started to go through treatment options with me, advising me of the standard course:

An immunosuppressant which in higher doses is used as a chemotherapy drug, and as a side effect ‘can’ have a detrimental effect on your liver and kidneys over time.

And also that there was a potential alternative route to follow, if I agreed to be a candidate in a study that the hospital were involved in:

An immunosuppressant, and a biologic drug.  This ‘could’ involve liver, kidney and lung damage as side-effects.

But, and here’s the big but, it might slow the progression of the disease, and I might not be in as much pain.  Sure, nausea, headaches and hair loss were all pretty standard with treatment, as well obviously as having your natural immune defences annihilated, and they could not guarantee the less pain bit of the bargain, but I might not be totally crippled by the disease quite as quickly.

I felt in that moment as if all the work I had been doing over the years to change my experience and building myself up had come toppling down and I was sitting in the rubble feeling hopeless.  But despite this, as the consultant talked, I could feel a huge no arising within me.

We seemed to have gone, within the space of ten minutes from me not having the disease and there be nothing more he could do, to me having the disease and now the pressure was on to get some drugs inside me as fast as humanly possible.  The emphasis being on fast; because early treatment yields better results.  I was so scared by what this man was saying laid in my future if I didn’t take the drugs, but in equal, if not more measure, my nervous system was fighting against the potential attack on my body that it perceived taking the drugs would bring.

My body was screaming at me to slow this the fuck down.

I bought myself some time.  I agreed to be put forward as a potential candidate for the study and to undertake the testing which would confirm whether or not I was a suitable subject.  That gave me two weeks to look into my options and try and decide which way I wanted to move forwards.

I went home, shell shocked and close to tears.

I will tell you more about the twists and turns my journey took beyond there in future instalments of A Mother’s Love.  It is too big a tale to share all in one go.

But, I feel I am in danger of rounding up this instalment without having actually got my point across, so I want to share with you why I am telling you all of this.

I guess I’m illustrating my own wiggly path of healing.  One with survival and fighting as a near constant theme.  I’m showing you, in brief, how many times I have trod through familiar territory, frantic to get out the other side and never to have to return.  I cannot tell you how many times I have genuinely believed that I have found the solution, the cure or the hack, only to discover later that what I had was an effective patch.  Effective for so long at least.

I also cannot tell you how many times I have sat in the rubble, when a flare or new set of (physical and/or psychological) symptoms has come along, believing that all might be lost.  But then remembering that I have trod this loop before, and I have learned things since then which makes the terrain look slightly different.  And then I start picking up the pieces, rebuilding my life raft, and adding some new patches to the mix, in the hope that this time I will be able to sail off into the sunset.

I wish I could tell you that I am at the end of this journey and that my sunset destination has been reached.  I wish I could tell you that I had the answer to all of our distress.  But I cannot.  I refer to you readers as fellow journeyers for a reason.  I am still working my way along.  I do know a thing or two about staying afloat now though, and I have learned from some of my missteps.  The biggest one being a frantic search for the next thing, and the next, and the next.

I don’t want to become for you like one of the people whom I have followed in the past; promising relief if you just follow my six step protocol, because then I would be inviting you into a frenzy of fighting and fixing too.  And from where I am standing today, I suspect that my frenzied search for a cure has been part of my problem.  I have been waging a war with myself, like I was some sort of foreign invader, rather than learning how to be with what is happening for me.  So for now at least, I’ve called off the search.  I am sticking with what I have and I’m deepening into my own experience.  I don’t know if it will have a positive impact on the disease, but to be honest, that’s not why I’m doing it.  I’ve had enough of fighting.  I’m tired.  I’ve decided it’s time I learned how to just be.  For some reason, this option has not occurred to me until very recently.

Okay, it is here that I shall leave you for this time fellow traveller.  Thank you for walking with me today.  If you feel compelled, please do reach out to let me know how my words have impacted you.  Until next time.

Rachel x