I had a bit of a to-do with my doctor last week. She is such a lovely woman, and has been an amazing champion of me, but I am desperate for me not to be ill for the rest of my life, so when she refused to look at a possibility I came up with after consulting Dr Google, I became overwhelmed and cried, that ugly cry that you don’t ever want to do in public.
She looked so tired. How could she not be? The pandemic has completely drained any energy from all medical personnel. She became stern, “We need to focus on what we know, Sarah. We should focus on the rheumatologist since your recent bloods show you are rheumatoid factor positive. I’m pretty sure you have fibromyalgia too.” I didn’t want to focus on the facts. I wanted to follow the tenuous thread I had found, desperate for there to be a simple solvable answer to the wading-through-sludge that has become my life.
Because she is wonderful, she agreed to test my blood further, to humour me, to put my mind at rest. I got those results yesterday. Dr Jane* could not see me – my brain fog was particularly bad yesterday and I missed my appointment. All morning I had been saying to myself “Don’t forget your appointment at 2:30pm” but I did forget, and she couldn’t squeeze me in. “Dr Jane* is going on an extended holiday too, so she can only see you in the middle of May. She asked if you would like to see Dr Ann*”. I did not, but I had little choice. I was so desperate for the blood tests to reveal my simple solution.
It did not. It was clear there was no solution. I have Myalgic Encephalomyalitis/Chronic Fatigue Syndrome (ME/CFS) and this is my life now.
Coupled with my neurodivergence, life feels so damn hard.
I came home and I cried. I sobbed as Dave held me assuring me that all would be okay. Not okay in a way that healthy people might mean, but okay in a way that says we will adapt and we will find meaning in your life again. The endless road before me feels so very bleak in these moments.
I don’t know how to find the words to describe the ever increasing list of ailments that has befallen my mind and body or the way my life looks now. On the face of it, I look “normal”, but behind the doors of our home is a very different story.
I was urged by Dr Jane* and my psychologist to apply for the NDIS. I was shocked when they first broached me with the idea. I don’t need this, I said. I am fine. Gently, they pointed out that Dave has now become my carer – cooking, cleaning, reminding me to take my medications, reminding me to eat, to attend appointments, driving me where I need to go. I ugly cried then too.
The NDIS didn’t give me much, but they did give me funding for a Functional Assessment to be done by an Occupational Therapist. My WHODAS* disability score was high, largely because of my neurodivergence coupled with menopause and the way it affects my executive functioning of my brain which affects my ability to do the simplest of tasks and the anxiety I feel around people . But ME/CFS has complicated things even further and made things so much worse.
My world feels like it is unravelling.
I’m 54. Too young to feel so helpless, and hopeless.
Already prone to melancholy, self pity has become my bedfellow despite advice to grieve the loss but don’t let it take hold. I know from bitter experience that grief knows no time frame.
Dr Jane* mentioned anti depressants the last time I spoke to her. I don’t want them. I have tried so many in the past and for whatever reason they do nothing to lift my mood. I am only rendered incapable of crying.
With the help of my psychologist and Dr Jane*, I am attempting to accept what has befallen me.
It is theorised that when I got Influenza A, where my temperature was above 39 for around 10 days, something happened, and somehow my brain and my nervous system got inflamed. This resulted in all the ailments that I experience now. And my goodness, the list is long, and ever-growing. I keep a list on my phone just so I can keep track.
By far, the most debilitating is the increased brain fog, post exertional malaise and unmitigated inability to control my emotions.
Basically, I can’t do much and I cry about it a lot. I have zero control over this.
But I am trying to lean in. I am trying to reframe what life will look like for me going forward.
A key factor of ME/CFS is that any action you make with your mind or body has a consequence the next day or a few days later. This means that when I do something, or even think about something too hard, my whole body quite literally shuts down and I cannot do anything. Not in a paralysis kind of way, but in the way where you are saying “I need to do this thing” to yourself and your body is saying “not today, let’s just sit, or let’s lie down” and no matter how much you try, you simply cannot. This is not just fatigue though, this is next level can’t think, can’t move, can’t function.
I am considered in the moderate range of ME/CFS meaning I am homebound, but not bed bound, though increasingly I have to go to bed as my body can’t stay upright some days (just saying that seems unreal to me). Basically, although most days I don’t get dressed, with a lot of effort I can, I can shower, I can move around the house. In truth though, all of these things come with an energy cost that is at times not worth it.
Coupled with the extreme post exertional malaise is also the neurologic symptoms. For me it is extreme brain fog where at times even thinking is too hard and conversations feel stilted. Keeping up with conversations, especially in crowded areas, are awfully hard. I wondered if I wasn’t getting dementia at one point because my brain just feels slower, like a deep black hole slower. I also have varying pain, tingling and numbness throughout the body as well as itching in the oddest places like my eyelids and my ears. Sleep dysfunction is now my norm – I either cannot fall asleep, stay asleep or go a night without night terrors. These are just a small sample of the afflictions.
As each new symptom arrives I make a mental note – is this AuDHD or ME/CFS? My psych asks me to consider if it matters. The point is I am experiencing disabling dysfunction, does it matter where it come from. Well, for one, to the NDIS it matters very much. They will fund anything to do with my Autism, but not my ME/CFS. So I automatically make that mental note despite my neurodivergence being directly attributable to how my body responds to the ME/CFS. No-one can truly seperate them, but the NDIS will attempt to do exactly that.
Still, I shouldn’t complain. I do have some domestic help now and that has truly made all the difference. Thus, I am incredibly grateful that I live in a country that has such a thing as the NDIS. Sure they make life difficult getting you to prove your disability and then using a very narrow disability lens to access the support once you have provided proof, but you know what, that it is in existence at all, is amazing, and I am not going to knock it.
So, leaning in to my new disability – AuDHD, ME/CFS, CPTSD and Depression. It sounds like a lot. It is a lot! But I do have a lot to be grateful for – beautiful and caring family, lovely home, an increasing team around me who is there to support me as much as possible. Sure, going through an autistic burnout or ME/CFS crash can be difficult to navigate, but I do have support and I am so very grateful for that. Chronic illness can be so isolating it can be difficult to remember these things. I have to consciously remind myself of the support I have.
It’s a difficult barrel to be looking down, this life of eternal chronical illness, but I have much to help me on that journey. I just have to try to remember that in my deepest, darkest moments.
* Names have been changed to protect identities