The CFS/ME student survival guide!

So here I am at the end of second year and I am exhausted! This generally means I feel pretty negative but I can look back to this time last year and see how much I have improved and learned. When I relapsed last year I could really have done with some encouraging words regarding being a student alongside having CFS/ME. I wasn't expecting anyone to say it was easy, but even to read about someone who had succeeded was rare. So this is my attempt to rectify this! My disclaimer is both that I haven't quite finished yet, and that I do not have all the answers.




1. It isn't easy, but it is possible!
There are many challenges that come with being student and many challenges that come with having CFS/ME. But I do want to assure people that it is actually possible to do both. University staff are generally pretty supportive of those with disabilities from experience.




2. Do your research concerning practical and financial help
I am speaking from Britain here and so these things may be different abroad. Here are a few of the things I researched.


2.a Disabled Student's Allowance - once you have a diagnosis this is extremely useful. I found the assessor to be very helpful and understanding. Things that particularly helped me this past year include help towards paying for taxis to and from lectures and exams, a printer, a supportive office chair, a mentor and computer software that read aloud PDFs when my brain was too tired to read. I also had a voice recorder for lectures which took the pressure off.


2.b Social Services - they weren't particularly helpful in my case but still worth investigating.
Personal Independence Payment - a benefit (that appears to be in upheaval a little at the moment) that helps towards mobility costs and personal care costs. Also not helpful in my case but also worth investigating.


2.c The university's support office - the people here were very supportive and helpful. They knew more about the help available to those with disabilities and were willing to listen if I was struggling with anything. I would suggest meeting the staff here if you are looking round a university on an open day.


2.d Special exam arrangements - personally I have been allowed 20 mins extra time per hour and this year I was allowed a computer to type my answers on should I wished. The extra time rooms are more relaxed than the larger rooms and no-one stares if you get up and move around. I was allowed a comfy chair or sofa so I could use the extra time as rest breaks.


2.e Coursework extensions - my university weren't too keen on these but worth getting if you are having a bad few days.


2.f Extenuating circumstances - my university had a form I could fill in at the end of each year listing all my courseworks and exams so that the exam board could take my illness into consideration. I assume these are pretty consistent across universities.


I have found my university to be pretty supportive generally. There may be other things I have missed but I think this is everything.




3. Be realistic and prioritise
This is of course easier said than done but is an invaluable skill. I realised that while my degree came above most other things I had to also prioritise basically looking after myself and occasionally my social life to stop myself going crazy. It depends exactly what you're looking for in your time at university. I would suggest that nights out are probably not the best idea! Some students do actually prefer a night in with a film, and being as my university is one of the quieter ones I found quite a few people like this.




4. Your social life isn't going to match what is on the brochure!
Like I just said, nights out partying aren't the best idea. The expectation generally includes partying and drinking but it is possible to enjoy yourself and not do these things. There are loads of things on on campus that include sitting down like plays and small-scale concerts so that you can support friends, get out and not exert yourself too much. You may be fortunate to get friends who are understanding of the CFS/ME and you may not. But never exert yourself too far just to fit in with someone who is pushing you too far out of ignorance.

5. Think about the best place to live
For my third year I have chosen to live in halls on campus in a catered accommodation. Some may choose to live in self-catered as this allows better for special diets but also involves the stress of cooking and shopping. Living at home with the support of parents may be the better option if commuting in is possible. Also look into supermarket grocery delivery if you live in self-catered halls or are in private rented accommodation.

Independence, humility and gratitude

I have been feeling very sorry for myself lately! Feeling rubbish all the time doesn't really help you to see straight. This week is reading week and so I am taking a break from independent living for a few days and have gone back home. I have still ended up making small meals and doing my washing but the strain of doing cleaning to other people's standards (mine is very low) and cooking main meals is relieved, along with the effort involved in going to lectures. Not entirely a holiday though, as I have a mound of work to get done!

I have been thinking about 3 things this last week: independence, humility and gratitude.

Independence
Coming home has meant that in a way I have lost some independence because my parents are helping me with things and I can pretend that university doesn't exist for most of the day if I wish. And in a way this is quite a nice feeling, but at the same time I do miss my independence, but I won't get all of it back when I go back to university. I can't walk for more than 10 minutes a day without a lot of pain, dizziness and nausea - and nowhere useful is within that walking distance, which means I either have to ask others to do things for me or ask others to help get me to the more distant places.
I have been getting to lectures by taxi which Student Finance have offered to reimburse me for due to my DSA. I calculated how much I have spent on taxis just this far and it came to £234!!
Disability can, in a number of cases, lead to people loosing at least some of their independence, and pride comes into it in that people do not like giving up their independence, being able to do things their way, and instead rely on others. Because really, how many people are truly reliable? If you muck something up and you end up suffering that's one thing but if you are relying on someone else to do it and they muck up, that's a whole different matter.

Humility
Personally, I don't think humans are naturally very good at this and humble people always amaze and inspire me. Jesus was a very humble person and He helps me to put things into perspective. Jesus was born to die for us, which meant that as soon as He knew what His calling was, His death was in sight. I think people generally think they have some great purpose, or at least they hope they do to make all the sufferings in life worth it, but what if your ultimate purpose was to die, and to be hated along the way? I think I would probably kick up a bit of a fuss and give up, but Jesus saw what was coming and yet still acted with great humility and grace. He didn't wallow in self pity (like I often do) and wonder why no-one was paying any attention to all the sacrifices He was making. God's approval was enough. That didn't make it an easy task, but as tasks go, it was pretty extraordinary.

Gratitude
I was reading the verse Phillipians 4:6-7 the other day:
'Do not be anxious about anything, but in everything, with prayer and petition, with thanksgiving, present your requests to God, and He will guard your hearts and minds in Lord Jesus.'
I have always liked that verse but never really noticed the thanksgiving part, but it is so important went it comes to not being anxious. I can say this from experience. It seems crazy when you are truly anxious to turn around and say thank you, but if you start small and work up, you do find things that you can be thankful for. Somehow, God uses our thanks to 'guard our hearts and minds' which can mean different things I suppose depending on the situation, but when you are anxious and your mind just won't stop creating new worries, the thanksgiving can guard your mind against these new worries.

The countdown begins...

I just wanted to first say how overwhelmed I was by how many people have read my last post, I was moved to tears! With a week left to go before term starts again at university, the familiar nervousness and worries creep in - what if people think I'm being rude in not joining in things? what if people think I am faking it? what if my symptoms get worse? what if I end up very isolated because I can't go out and talk to people?

And so, of course, I prayed about these things, and although I still worry about them, God has used the response I had to my last post to show me just how much He loves me, and just how much support I have. So thank you to everyone who has been reading, you are an answer to prayer!


I have spent the last 4 months trying to improve my health by following the only thing that has been consistently shown to improve symptoms in people with CFS/ME - doing nothing! I never thought that I would end up with a condition that made it impossible to exercise. Actually when I say nothing, it's a controlled sort of nothing, as in I can do a limited amount, but only because if I literally did nothing except what is necessary for survival, life would become pretty dull.

So my summer has been basically filled with days' worth of television (thank you Netflix), mounds of ironing (somehow the easiest chore, and one that never gets done at home) and endless form-filling and research. If I look at the summer as a whole, I would probably say that it has been successful in improving my health. Maybe not quite (OK, not nearly) as much as I would have liked, but the fact that I am sitting upright typing this as well as having had a very short trip into town this morning by car is a major breakthrough.

I feel very proud with my achievements but 4 months is a long time and I struggle to remember exactly what I was like at the start. One thing I do remember is that I was feeling very low and definitely ready to throw in the metaphorical towel concerning my degree. However, 4 months of recovery and numerous, extremely welcome and kind messages and discussions have helped me to now make a list of the good things in life as it is:

- Disabled Students Allowance has promised to be very generous and so I am expecting to (at the very least) be given a mentor, a very comfortable office chair and computer equipment. Yes, given!

- After years of trying to get to a weight that I like, the lack of activity I am now forced to has allowed me to be able to put on the necessary pounds, and I feel fabulous!

- Somehow my hair stays grease-free for days at a time so a highly energy-consuming activity like hair washing doesn't have to be done every day.

- I have convinced myself that I do *need* a smartphone as I can't be always walking to top up my credit on payg, and I have not looked back.

- Trips out become special as they are a rare treat.

- My bed and me are firm friends.

- Any shopping trip expenditure can be justified as either 'I *need* this now' or 'I haven't been shopping in AGES so I can spend the money I saved by not shopping before' so they become guilt-free.

- God is very good, and He promises that any suffering will be greatly recompensed, in fact the scales will tip towards the good rather than the bad.

So here goes!



And in terms of the official support the list goes:
- Disabled Students Allowance (DSA) have said yes to funding me and I just have to turn up to a meeting with someone who is willing to splash some cash!
- Personal Independence Payment (PIP; totally wrongly named by the way) have taken my form that I spent so much time on and have not been heard of since.
- Social Services have said we'll see what we can do but the man on the phone was very nice :)

Pacing

The exam season is thankfully well over but my body is still reeling from the effort of a first year at university.

My aim, once term ended, was to spend the entire 4 month summer holiday doing my utmost to increase my health as much as possible. Doctors appointments are few and far between, and appear to be following a philosophy that my illness is all in my head, despite the rheumatologist I went to see saying she thought it was a biological illness. And so, my health is in my hands! What a challenge!

I've never been a very disciplined person and I like what is bad for me way too much so this has been a very difficult turnaround. I have been aiming to reduce my symptoms through a process called pacing. It's got quite a vague name and description and probably means different things to different people. Based on trial and error, and common sense, I have described it in my life to mean doing as much as I can without producing symptoms.

Sounds simple? No. Not only is there the frustration of 'as much as I can' meaning sitting up in a chair for a couple of hours and maybe ironing a couple of things, but there is the daily fluctuations that characterise this condition. Some days I am capable of doing more and others, less. And it is so tempting to do much more on a day that you feel you can do much more but this only leads to the next few days not being able to even sit upright. This is called a 'boom and bust cycle' and it requires a lot of self restraint to not succumb to it.

I guess the main idea is that without pacing and control, the good days and bad days become much more distinct (like the idea that the rich get richer and the poor get poorer) and the overall trend is a downward inclination. But by reducing the difference between good days and bad days (or as I prefer to call them up days and down days) meaning that life is a little more predictable and the down days are not so bad. I think this also encourages the overall trend to go up too but it's too soon to tell.

So hopefully 4 months will be enough for the pacing to make enough of a difference that going back to university in the Autumn will be possible.

The next step is to get a proper, official diagnosis from someone who is willing to pass it on to student finance and those in charge of handing out benefits but that's another battle!