It has been over a year since I posted a blog…what words would I use to describe those 15 months?
The word ‘sad’ doesn’t seem to quite capture the agony I have felt but it is a fitting acronym, preferable to ‘das’ or ‘ads’ or ‘sda’!
Symptoms have been unpredictably constant. By that I mean the nature of the symptom is unpredictable: sometimes it’s neuropathic pain, blurred vision, slurred speech, or crashing fatigue. However I can predictably anticipate that I will have a symptom of some form, hence the constancy.
I have found it extremely difficult to continue with my PhD whilst feeling so awful. The link between physical and mental health is so strong that it is impossible for one to have a tantrum without the other. It is quite a toxic mix:
Scenario A: I feel a bit more hopeful and less anxious today…but I have burning pain in my legs and feel fatigued. I know, maybe I will stay in and read my book but my vision is blurry and the pain is distracting. My mood crashes.
Scenario B: My body feels okay today! My legs are not in pain, my eyes are clear, I feel able to move, and my balance is okay. But I feel strangled by suicidal thoughts. Everything inside my mind feels heavy and unbearable. I want to sleep forever. My body begins to ache.
The ideal ‘scenario C’ whereby my physical and mental health are okay never seems to happen. I am considering suspending my degree for a few months but I am unsure if anything would change. My academic goals have always been important to me. However the development of MS and worsening mental health are making it so difficult to keep going.
I have become so isolated over the year so it is understandable that I am increasingly anxious. Is it possible to forget how to socialise? It feels tempting to hide when feeling so depressed. I do not feel like I have anything valuable to say or contribute. ‘What did you do on the weekend?’…’I stayed in bed trying not to hurt myself whilst having ongoing thoughts of dying’. That’s one way to kill a conversation. I opt for the vague but cheerful response, ‘I had a quiet relaxing weekend at home, how about you?’ Much better. However I have felt so shite for so long that I do not have the energy for this forced conversation. Yet the more isolated I become the more my physical and mental symptoms drown me. The viscious cycle is like a noose around my neck.
So where do I go from here? After many months of going no-where, I’ve started telling people. By people I don’t mean the post person, the cashier, the randomer who holds the door open in the library, or the neighbours cat who sits on our doorstep. I mean my PhD supervisors. It is difficult to explain the depth of all the invisible symptoms. I look fine and I am often hiding behind a confident facade but I feel absolutely awful. So my favourite method is to email a brief summary of my agony. I explain that I am good at hiding everything and begun to describe how things are day-to-day for me.
It’s scary being more open. I feel more vulnerable and exposed. But I remind myself that these feelings are not worse than the suffocating darkness. It’s a start and maybe it will be the beginning of a road out of this ditch.