Sunday, December 2, 2012

Roller coaster weeks

Where to start...
In my last post about college I wrote how proud I was for having finished my first module in Disability Studies, but also about the challenging experienced in terms of my health.
That same day I visited my GP and had to acknowledge that the course and all that came with it was too much. I felt ill. Exhausted. Full of adrenalin which had kept me going for all those weeks. Still proud and not yet ready to give up, but changes needed to be made.
In fairness the GP was on my side, and together we looked at how I could continue with my course. We looked at medication, and of course pacing.

I did make it to college that week, but only because I had a direct lift to Cork, and did not have to deal with taxi-bus-taxi or another bus... During the lecture, a fellow student asked a few times if I was ok. I slowly shook my head and kept on taking notes, suggesting "don't ask because I am going to cry..." 
All I wanted was to be in bed.
Drawing of me resting © Spark Deeley '09 
And that is what I did for the following weeks. 
A rollercoaster few weeks as I not only did I search for a way how I could still be part of the study but also had to yet again come to terms with the reality that M.E. is the biggest dictator when it comes to my life.
I can have plans but nothing can be achieved without major compromises being made along the way. A sobering thought.

My initial plans for college were to drive myself to the bus, travel to Cork and have a room there. I would stay the night and on the day after the course have the option to go to the campus, or meet with friends. I see now that was rather unrealistic, but I truly thought this was within my scope, as I felt that I was taking the journey in stages and had plenty of times in between to rest/recover. Enthusiasm is a great thing! Maybe the tantalizing notion of independence blurred all reality.

As I have rarely been able to drive during the past few years, I have now come to accept that driving is not within my scope anymore. I am about to sell my car. A car is in a way a symbol of independence, but it has now become more of a liability.

So. Travel to Cork was organised with the support of taxis, kindly sponsored by various organisations.
A little less independence than I craved for, but reality.
Now even that is not reality anymore. I can not cope with this exhausting weekly journey, and be able to sit in class for the evening, and study/read for my course and do the assignments.

Stretched out on the couch, I came up with all sorts of ideas to somehow continue with the course. What eventually came out of it is that all the resources for the travel, and my rent in Cork, was enough to have a direct lift and back to the college on college night. A willing driver, support from college, and funding bodies made this possible. I am soooo grateful. And yet... it hurts a little that I have to give up more of my independence in a way. This might sound ungrateful, but there is very little chance to fulfill my own plans on my own terms.

Last Thursday was the first time I had this direct lift. I was much better. It was lovely to be welcomed back in the class and to reacquaint myself with fellow students and the course material.

What is bothering me though is how I must look like a big "pain in the neck" with all my needs. Living with M.E. is a challenge as it effects every aspect of my being; mobility, brain energy, cognitive issues, stamina. I might seem ok for a few hours, but the fact that it takes days to recover from any activity is not seen by others. Nothing can be taken form granted. It would probably be easier on me and others around me, if I didn't have desires, wishes, plans... But then, if I didn't have this enthusiasm for life and see what I can do with my limited resources of energy and mobility, I possibly would have still be housebound/bed bound. (This has been suggested to me by friends and (complimentary) health practitioners.) 

Throughout the lifetime of this illness, over 14 years, I have set goals, and now see that I always had to negotiate with the illness and myself how I could achieve this goal. It might be in terms of creating art, on having to look at and experiment with different materials and tools which would make it possible for me to create. It might have been in terms of getting outside the door on my own, and after research settled for the use of a rolator and a mobility scooter. 
Usually these challenges are my private concerns.
This time however to achieve the goal of going to college, it meant that I had to accept the help/support in much greater detail from others. Others who don't know me, and are not aware of my life with M.E. to date. Yes, I have needs and I find it a huge mental challenge to acknowledge them, although this might not look like this to others. 
In order for me to continue the course I so enjoy and is so right for me, I have to speak up. I don't want to be that "pain in the neck with huge needs", but glad I did speak up, and ever so grateful for being listened to and having been given another chance to stay in college.

So now, I will follow Robert (Cat)'s advice to rest some more...

As ever, I am thanking you all for your support you have given me. Best wishes to you all.