Does anyone have Bernard’s Watch?

I don’t know what it would look like if my psychological distress showed itself physically. It’s 12:35pm and I’m back in bed after being up for four hours, achieving nothing and feeling like rubbish. I have no idea how to make myself feel any better. F*ck it, I can’t even be bothered to write this blog.

I wrote that 5 hours ago. What have I achieved in that time? Absolutely nothing. I have laid in bed, wrote a few depressing paragraphs in my notebook and battled with endless urges to hurt myself. I feel so broken and I am not sure there are sufficient words to describe it.

Do any 90s kids remember Bernard’s Watch? Oh how I wish I had one. Bernard’s fancy pocket watch would stop time so that he could do things whilst the world was paused. Then he would be able to continue time. What would I do if I had this tech? I envisage spending months recovering from all the hell of the past 10 years. I would take my time and do the things that I wanted to. I would read the books I want to read, visit places I want to see, write a novel, become a yoga expert, meditate, all whilst time was frozen. I would have no work commitments, no PhD deadlines, or medical appointments to attend. My energy would 100% be invested in finding a way forward.

Alas, B’s watch is not available to me or anyone (unless you know something I don’t). So with time passing by how can I focus on myself with so many other things to think about? I don’t have the time to be feeling this crap. I have spent 9 hours today battling the monsters in my mind and feeling frustrated by physical symptoms. On the outside I must look like a lazy de-motivated woman. On the inside I’m an extremely distressed woman desperately trying to hold on each and every day.

I know there is no quick solution, no magic wand, no magic pocket watch. This is it. I only have this day, this moment, this breath. Although I remind myself of this every day I cannot stop the past from strangling me and chaining me to the floor. Making it impossible to get up, move forward, or live.

If anyone has a solution or owns their own Bernard’s Watch please do share. I would be forever grateful.

Progress has Diminished

I’ve been working on my PhD for 9 months now and I have completely ran out of ink. (I haven’t really had any ink for the past 8 months but let’s keep that between us.) From the above picture, it looks as though I have at least used some ink. However the ink has only created endless doodles. You would think I would have perfected my drawing of a cloud/tree/house/hill/flower by now, but I haven’t. My art is still crap and so is my PhD progress.

At the start of my PhD I attended a good workshop by Hugh Kearns called ‘How to plan your doctorate’. I am going to dig out my notes from this in the hope that I can start working. Hugh is part of ‘ThinkWell’ which uses research to help students/academics to achieve their maximum productivity. There are lots of good, and free, resources which may help which you can access here

Perhaps it is unsurprising that I am not working…I can barely get up sometimes. The toxic mix of mental and physical health problems cements me in my own body. I need something to change. If only I could go out and buy a pack of ink and then productivity would ensue. Alas the ink is merely an analogy.

So my plan is to break it all down and make very small goals. Hopefully these will be more achievable and I will begin to see some progress. Goals for today:

  • Make tea
  • Drink tea
  • Make another cup of tea
  • Drink another cup of tea
  • Check emails
  • Reply to 1 email
  • Read 1 paragraph of the ‘journal club’ article
  • More tea?

It’s a start.

Please halt Depression

It has been over a year since I posted a blog…what words would I use to describe those 15 months?

  • Symptoms
  • Anxiety
  • Depression

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.

 

 

Perfect hardware Discovery

It’s my second week of a part-time PhD and I am exhausted. Words are insufficient to describe how tired my body and mind feel. However I am amazed at the services available to make doctoral study available to people who have a range of difficulties. I had an hour meeting with the assistive technology support in the library. I walked away from the appointment with a range of software to help my vision, a bendy keyboard and the strangest ‘mouse’ I have ever seen:

tech

The device below the keyboard is the ‘mouse’! It uses a slider bar to move the cursor which you can press to click, a trackball to scroll and buttons that you press once for: copy, paste and double click. I never knew these types of hardware existed! Perfect!

Since developing MS life feels and looks different. I would not be able to engage with my studies if I did not adjust things to cater for these changes. It sounds like it has been easy getting to this stage but it hasn’t. I’ve been through a whole range of different emotions: anger, denial, depression, and at times acceptance. Sometimes I flitter through these stages all on one day but the important thing that I remind myself is that acceptance is there somewhere – even if it is small some days. With the help of the assistive software and hardware I feel more confident in my abilities and can see myself coping with the doctoral study.