It has been too long since I last wrote, but I guess everything got on top of me more then I would like to admit.
I will go over my trip to Barcelona in another post, but at the moment it is too much to think about, so instead I’m going to talk about the other changes in my life.
As often happens when I get severely depressed (we are talking 6 weeks of crying/sleeping/insomnia/dissociation/suicidal thoughts and isolation which landed me on a second antidepressant and a very concerned GP) I have put some changes in place. I couldn’t live the way I have been living. Life felt aimless. I couldn’t work, wasn’t at university, and I was filling my time with pointless activities which (although creative) couldn’t give me any sense of achievement or purpose. Life became nothing more then watching my body disintegrate and pretending not to notice whilst being petrified behind closed doors. I couldn’t cope with another year like the last 3, especially with my latest health updates.
So three weeks before term was meant to start I bit the bullet and applied to do a part time second undergraduate degree in psychology. I could have done a conversion course as a masters, but realistically I have no way of knowing if I can cope with studying, and lets face it – the longer I can stretch out my education, the less time I will have feeling like I have nothing to aim for.
So far it has been tough. I didn’t realise how much my body had deconditioned – 3 or so years with little activity, sitting on the sofa really has lost me a lot of strength and my fatigue is much worse then it used to be. I am also struggling a lot with pain levels, and thanks to my somewhat wobbly head, I am getting migraines flaring for the few days post uni which is leaving little time to study. Socially it has been terrifying (I am not good at people, let alone groups of them whilst I’m sat in a wheelchair looking so obviously different), but other then the odd issue, so far that has actually been a huge positive. Its the first time I’ve really met new people in years, and thankfully a lot of them are just as quirky and chatty as I am. I am struggling a lot with my PTSD flairing up. Dissociation has become somewhat of a norm again, but the university is supportive, and no one is batting an eyelid at the silly putty coming out in lectures. All in all, as hard as Im finding it, I am also relieved that I can hold my head up high (not literally of course) and say that I am doing something with my life.
Leaving music behind has been surprisingly difficult. I didn’t stop playing because I wanted to. I stopped playing because my joints were causing me too much pain, my fatigue was unmanageable and I was in no fit state to force my body to carry on. I think its the lack of choice that makes it so upsetting. Music up until now has been my life. Since the age of 3 I played almost every day right up until my late 20’s, and without it I am not really sure who I will become. Maybe one day, if my body miraculously gets more manageable I can come back to it, but until then, it seems that life has taken me off on another path.
So – lets talk about life as a disabled student.
Turning up to university is scary – but add that to turning up on wheels, and we are talking some major anxiety. What if people are nasty? What if people think I’m attention seeking? What if nobody talks to you? I had all of these what ifs and more, and fully freaked out for the entire time before I started. On the first couple of days it was awkward. I took my PA along to support me, and yes people didn’t really approach me to start up conversations. I found that I had to initiate conversation, but once I did and people started to get to know me, all of the what ifs have turned out to be false.
Universities are incredibly supportive most of the time. So far I have had excellent support from student services, and a personal tutor who goes above and beyond intruding to get everything sorted and comfortable. All of the tutors I have come into contact with have been brilliant, and no one has made me feel out of place. I know that I will have periods of time where I struggle more, but I feel like the university are prepared to help me with that, and I know that should I need to take extra time or time out from the course, the support is there to do this. This is where university is so different from work. I know that I can pace my learning according to my needs. I can stretch it out, take weeks, months or even a year off and still come back to it when I am well enough to do so. In work I would loose my job long before I got to that point as I am simply not able to be reliable enough. This is a middle ground between being off sick and working. Doing part time study is pushing me to the limits of what I can physically manage, but there is so much flexibility that the only pressure I feel is from me.
Mobility wise I knew that if I wanted to be able to study, something had to give. I had a manual wheelchair from wheelchair services, and my cardiologist was fully encouraging me to use it as part of pacing myself properly. I knew that to get around campus on my feet would have meant I’d have dropped out (or onto the floor) within a week or two of starting, so a wheelchair was the only option. This has been a hard pill to swallow. I have been so determined to resist looking like a disabled person (ironic considering I have gotten used to walking around with a rollater called Dorris). I didn’t want my disability/illness to be the first think people notice about me, but now it is unavoidable. The benefits tho far outweigh the loss of pride, and I know that being able to come in on my dizziest day or a day when my leg is completely numb is worth much more then my somewhat peculiar vanity.
This has been one of the biggest challenges I have done. Reading with a combination of dyslexia, brain fog, dissociation and vision changes certainly make for an interesting afternoon, but I am loving every moment of it. I feel lucky to have been able to give it a go, and relieved that I have a reason to get up in the morning.
Changes are always scary, and especially so for those of us with chronic illnesses, but I am a firm believer that it is worth every moment of fear to be able to try something you had thought was impossible to achieve.
I will update you on the health side of things as soon as I have gotten my head together again!