Friday, 28 June 2013

Tackling Uni with a chronic illness

At the request of a recent commenter on my Intro post, this post is about coping with Uni with a chronic illness. It's a big topic, but I hope some of this info is useful for some of you out there :)

It's difficult to be at Uni with a condition that seriously interferes with your every day life. It's hard to be unable to drink alcohol living in an environment where alcohol and clubbing plays a large part in people's social lives. It's challenging to miss out on so much because you simply don't feel well enough to join in.

It is, however, a fantastic thing to continue to do. I am proud and grateful to still be at university, and it gives me a focus and a purpose. I can see myself making progress at something which helps to keep me motivated. More than anything, it gives me a reason to get out of bed in the morning, and gives me something to focus on to distract me from the constant pain.

I can't achieve a lot away from Uni but at Uni I can work towards the same things as my peers. Educationally we are equals. I may be unable to keep up with them physically but I can get a degree the same as theirs. Yes, I need a few adjustments along the way, but I can reach the same endpoint which is satisfying!

In terms of adjustments, there is a significant amount of help available. The first thing to do if you are at university with a chronic illness is to apply for Disabled Students Allowances. Yep, if you're anything like me you will despise being classed as 'disabled', but applying for DSAs is the first step to getting a lot of incredibly helpful support. (These can be applied for before you go to Uni if you're in the process of applying and A-levels etc, allowing support to be in place from day 1)

You can be supplied with a lot of equipment: a laptop with a lot of very helpful software (dyslexia software and software that reads all your work out to you etc), a printer with scanner, an ergonomic desk chair, ergonomic keyboard and mouse, laptop bag on wheels, voice recorder for recording lectures.. Can't think of anything else right now- but basically lots of stuff to make life as easy as possible and reduce the impact of your illness.

They pay the difference between public transport and taxis if you have difficulty using public transport too, which I imagine is particularly useful if you live a while away from Uni. My advice would be to live as close to Uni as possible though- rests/naps during the day can really really help if you have a busy schedule. You also get allowances for printing and some textbooks.

DSAs can also pay for support workers- absolutely life saving!! You can have note takers with you in lectures so that you can focus on listening instead of writing notes. You can have a mentor to meet with to help you stay organised with work and deadlines, and they can help by sitting with you while you're working to help with word finding problems and to keep you on task. You can also get support workers to help with anything course-specific made more difficult by your condition.

Obviously all this stuff doesn't just automatically get thrown at you because you're ill, you have to have a lengthy 'needs assessment', but I found that they were very much on my side and recommended anything that they felt would help me. They recommend things based on your individual symptoms and challenges, but they recommend anything and everything they feel would be beneficial for your particular circumstances, and you have a lot of influence because they work with you throughout the assessment to work out your preferences.

3 quotes are obtained for everything recommended and the entire report is then sent to your funding body (you have the option of seeing it first if you wish). Your funding body will then most likely choose the cheapest quote but agree to everything.

If you have a change in circumstances and need some extra help or think of something that would be useful later on, your university disability advisor can recommend this to your funding body and it can be arranged (e.g. Extra hours of mentoring following a relapse that you're taking a long time to fully settle out of).

There is also a lot of support available within most universities- disability advisers are a fantastic place to start. You can get extra time and time for breaks in exams if appropriate, and can get your exam schedule altered if you have multiple exams in one day and you aren't able to do this for medical reasons. Disability services can help with giving the appropriate information to your department, or liaising with them when course-specific adjustments need to be made.

It can be difficult to know what information to share with whom, but just trust your instincts. Try to be comfortable and confident enough in yourself to not freak out when the topic comes up. In my experience, I've found it best to be open and honest with people, but only answer the questions they ask as opposed to overwhelming them with your full medical history. This also counts for your friends too- it's not like school, you're away from home and are likely to need a lot of support from your friends at times to get you through difficult patches, and they also need to understand the reasons why you don't always do your share around the house if you become housemates. At school I was very cagey and told people very little, but at Uni, your friends are like a new family- you need to let them in to have a support network you can rely on.

My advice on coping with Uni would be don't give up but don't try to keep up with healthy students. Recognise when rest will be more beneficial than pushing through. Most importantly: accept help! Don't let your pride get in the way of you getting the necessary support. Admitting you have complicated medical problems affecting the way you can do things is difficult, but it's better to admit there's a problem early on rather than not achieving what you could have achieved because you didn't tell anyone about your difficulties so didn't receive the appropriate support.

Uni with CFS is far from easy. There will probably be times when you are in bed and your friends are out having fun. There will be a lot of times when you can't revise as well as you would like because your symptoms are exacerbated by the stress of the exams or overworking yourself with revision. There will probably be times when you have a relapse and wonder how on earth everything is going to work out. You will probably consider quitting at least a few times every year because your symptoms are horrible. Maybe you'll even have to take some time out from your course at some point, or will have to delay an exam or 2 if you have badly-timed relapses or a further deterioration in health to adapt to. Don't beat yourself up if this happens, it's not under your control (I would advise finding a good doctor- GP or specialist- who is willing to back you up if you run into any problems and need adjustments though, and you do have control over that! A good GP or specialist is invaluable whatever your circumstances, so do go to the trouble of searching one out!). I would say do try to stick it out though, as long as you're not harming yourself, as the satisfaction of every hurdle overcome is huge. Get the support you need, look after yourself as best you can and keep looking forward! Good luck!!

(Any questions from anyone about any of this do let me know in the comments and I'll try to help!)

Tuesday, 25 June 2013

Nausea & the ups and inevitable downs of life with chronic illness

I'm still doing relatively ok, but things aren't quite as rosy as they were seeming when I last posted. Don't get me wrong- things are still amazing with poppy, I'm just not as well as I was- I'm having a lot of difficulty with abdominal pains again and am feeling exhausted and really sick.

I'm feeling a little bit low. The nausea is overwhelming, and I'm really not sure what else there is left to try.. I've tried so many different nausea meds with no success: antiemetics they give to cancer sufferers going through chemo, motion sickness drugs, antihistamines that supposedly help nausea, IBS meds, meds to reduce stomach acid- you name it I've tried it... yet it seems likely that my poor GP is once again going to be faced with a desperate me sat in his chair, begging for some relief from this oppressive nausea.
My digestive system hates me. But hey- so does most of the rest of my body.

I've got to the point of feeling utterly 'sick and tired of being sick and tired' again. It happens. I've been ill for well over 3 and a half years, by now I know that this will be a transient feeling, I've just got to ride it out.
Chronic illness is non-stop and no-one can cope with it perfectly 100% of the time. Even if they claim to, it's very likely that they're just not admitting when secretly they are in turmoil. It's natural, it's nothing for anyone to freak out about- of course everyone who is in constant pain and feeling utterly ill every single second of every day isn't going to be ok with that and accept it all of the time- that would be more unnatural than once in a while feeling cross and bleurgh about it all. I feel entitled to have the occasional few hours feeling like my life is naff. It doesn't do anyone any harm.

It is only a problem when you get stuck long-term in this episode of down-ness, and can't see a way out. It happens, it's not anyone's fault, and absolutely no-one should be made to feel like it is- sometimes people just get to the end of what they can deal with, they can't cope any-more. That is depression, which is not what I'm talking about here (if you think you could be suffering from depression, please, please talk to someone and seek help)- yes, it's common in the chronic illness community, for obvious reasons, but grief and sorrow are even more prevalent, and nobody should be denied the right to express these emotions either. People with chronic illness have lost a lot, they have to be allowed to grieve for the healthy life they once had, it's all part of acceptance.

Curling up feeling sorry for myself is my plan of action for tonight, and I make no apologies for that, and anyone else feeling the same- go ahead and feel whatever you want to feel, and I send virtual hugs and best wishes in your direction.

Tomorrow, things will almost certainly seem brighter. I'm sharing this purely for realism. There are lots of dark times with chronic illness, for a multitude of reasons, and if blogs only ever show people's optimistic thoughts, then those in periods of pessimism are left feeling like no-one understands. The truth is that we all understand, everyone human has down days. If you're feeling low, don't deny yourself the opportunity to express these emotions, just ride them out and get through it. Hang on in there, light is waiting at the end of the tunnel, and don't forget- it's perfectly natural.

Saturday, 22 June 2013

My new lease of life: Poppy, maxfax & physio update

Just thought I'd do a quick blog as an update really.
Things are going amazingly well with Poppy! I feel like I've been released having been restricted by my naff body for years. I can now do what I like without it being horrifically painful, and don't have to worry about injuries and severe payback. I feel so much more alive, because I can do more, and because I'm not using every last drop of energy trying to get to and from Uni. Wonderful. I'm surprised that I'm seeing the results so soon- the pain in my legs has already significantly reduced. I've been out at a huge shopping centre all day today and obviously I'm exhausted but in a sleepy-exhausted way from all the stimulation as opposed to a painy-exhausted way. It takes quite a lot of concentrating navigating round everything and everyone but I feel so much more confident getting through crowds compared to when I was walking because I'm not having to worry about my balance or physically walking. I have had no difficulty getting her round the shops (with one exception- but I think that was the fault of the shop not poppy!), although it's strange having to find all the lifts.

I noticed people looking and a few remarks, but they were about how great Poppy looked as opposed to looking at me and wondering why I was on it. I feel so comfortable on Poppy already, it just feels right. Obviously I'd rather be walking but she really is the next best thing. I've had so many compliments about her! I feel like I tolerated being in a wheelchair whereas I am embracing using poppy, because it feels like a step forward as opposed to a step backward. She is opening the world back up to me.

In other news- I've been at the hospital again (Maxfax). I was pleased to report that my level of facial pain is currently entirely bearable. However, they want the pain to be stopped completely, ideally, to get my body used to not producing the pointless pain messages to hopefully stop them being made. I can see what they mean, but I don't know whether it's realistic. They're wanting to try a different anticonvulsant drug to see whether it's more effective for me, but they're going to check with the consultant helping with managing my CFS first, which I'm fully supportive of, because he has experience of what CFS patients tend to tolerate best. He might also say that he'd rather my meds were left alone for now, which I'd also be perfectly satisfied with.

Dealing with multiple doctors is a tricky thing. It's difficult to get them all working together, aiming for the same thing and not interfering with one another, but also not just passing you round in a circle with no-one dealing with any of your problems because they deem it to fall under someone else's remit. Thankfully my doctors work together well, and work well with me too.

It's hard being complicated.
You need doctors who both like a challenge, but accept that the challenge probably won't have an immediate solution. You are the jigsaw puzzle with pieces missing- and there's no immediate satisfaction to be had. The doctor can go looking for the missing jigsaw pieces, but they might not have even been produced yet, or they might be locked away somewhere they can't get to. The jigsaw is probably currently unsolvable and I can understand that completing half a puzzle really isn't very rewarding, particularly when every time you go back the pieces turn out to be in the wrong place and you have to start from even further back, or when the picture is fading and it becomes even more complicated and difficult to work out.
I know I'm a frustrating patient to work with, not because I'm not grateful or because I'm morose or argumentative, but because I'm the currently unsolvable jigsaw puzzle that nobody would willingly choose to tackle.

I've also had a really positive physiotherapy session. I said that I was concerned that my left foot is turning in increasingly frequently, and I'm putting my weight on the outside of my foot, presumably to stop my toes catching when my muscles tire. My physio watched the way I'm walking at the moment and could see the way the problem was developing and has given me some 'exercises' to try to work towards strengthening the muscles in my legs and hopefully correcting the current problems. He said that at the moment I'm positioning my legs and hoping they'll take my weight as opposed to my muscles working in the way they should. Thankfully he said he wouldn't take any more walking away from me because he realises that it would be really obstructive to me living normally, and with having reduced my walking as much as reasonably practical with having got poppy recently, hopefully that will help. We're working from a much better place to improve things now that I'm not absolutely wrecking my muscles every day walking to and from Uni, so hopefully the walking I do do can be made increasingly normal and less painful, and my body will cope better. Obviously eventually an improvement in the distance I can walk without significant deterioration would be brilliant.

Poppy has now been on and off multiple trains, in and out of the boots of multiple taxis, has been disassembled and reassembled lots and lots of times, has been around loads of shops, around hospital, in cafes, around Uni, in a lot of lifts, up and down loads of ramps etc- she has been brilliant!

Sunday, 16 June 2013

Poppy (my mobility scooter)

This weekend was my first weekend on my mobility scooter, now named 'Poppy' (because she allows me to pop into town or pop round to a friend's house etc, plus she's currently red). The freedom is AMAZING.

Sitting in a wheelchair for trips out felt very mixed- it was good to be getting out but I felt self conscious, 'disabled' and like I had totally lost my autonomy and independence. As I've probably mentioned a ridiculous number of times so far on this blog (apologies if so), my independence is something I really value very highly. I liked the reduced pain of being in a wheelchair for trips out, but didn't like the wheelchair-ness.

Poppy has solved this. I needed a solution because I needed to be able to go places alone and couldn't be reliant on others all the time, but my walking was deteriorating and becoming increasingly painful, and I can't self-propel because my arms would end up as naff as my legs. Poppy is the best solution ever. I thought it was impossible for me to get a mobility scooter because I live in an upstairs flat, with a step up to the front door, a narrow hallway and then a steep flight of stairs. Doesn't shout accessible, does it? Unless you've already seen a photo of the infamous poppy, you're probably wondering what the answer was.. A TravelScoot from ! A really wonderful invention. I asked so many questions before buying it (from Germany, but they're available all over- click on the flags at the top of his website if you're looking at this blog from other countries) but the inventor was very patient with me! So far, it seems to be a fantastic decision, everything has been going very smoothly (apart from a slight mishap with my parents' door frame- turns out the back of a 3-wheeled scooter is wider than the front.. Peculiar ;) lol, so they've got a nice chip as a momento of my first proper trip out on Poppy- sorry Dad).

The afternoon I got home, I put poppy together very easily and wizzed up and down the pavement outside the house- awesome- haven't moved so fast in a long time!

My dog came for a ride sat on my knee and then I went out several times with him the next day, taking over the lead once he was more used to it. Today me and my dog went out for the first time just us for a very long time- it was brilliant. He did turn around and look for my parents quite a few times and had to be encouraged to keep going a couple of times but by the time we were on our way back I think he was contributing to my forward momentum to a greater extent than my battery! Lol.

On Saturday I did shops for the first time on a scooter- a much more pleasant experience than in a wheelchair- I could go wherever I wanted, look at whatever I wanted and didn't end up positioned just in front of something interesting to look at, as inevitably happens in a wheelchair, despite your driver's best intentions. It was also so, so, so much better than shuffling around in agony, having to be incredibly careful to go down the right isle and being devastated when something is the far end of the shop. On the scooter I could just BROWSE- a word that hasn't existed for me for a long time now. It didn't bother me that things were a long way away, and if we had to go back to close to where we had just been when we started looking for something else, it didn't feel like some divine power was trying to slowly murder me, I was just pleased to practice my manoeuvring!

Putting her in the car to take her out and about was easy- without the battery attached lifting the scooter in and out of the car is a doddle- and even with the battery it is perfectly doable, even by me- I just put the handlebars down and lifted her in! (Did have to tighten the seat clamp because it fell off a couple of times when lifting by the seat but that was very easily sorted!). I put the parking brakes on each time to stop her rolling about in the boot and then forgot to take them off each time and couldn't work out why she wasn't moving.. Oops. At the station today I reached the edge of a section of pavement with no dropped kerb so just hopped off, lifted her down and jumped back on, simple as- my Dad laughed and said it was just like the advert ;)

I've fixed a bike lock to her, she has a poppy (what else!) attached to the front, and smiley face reflectors stuck on her (mostly for safety, but they make it look younger too). I also have some red ribbon at the ready for when I decide further customising is required ;)

I also braved public transport today for the first time. I was unnecessarily nervous. Assistance turned up as booked, and no-one ran off with any of my scooter parts. I think in future I'm going to lock the main frame to something (probably the train handle) for peace of mind, and then take the seat with me and put it in the over-head racks. The battery slotted into the front pocket of my case fine, although I might take that with me in future too. It might not always be necessary to fold it down- today was BUSY- but in future I'll feel more confident about what I'm doing anyway. I must say that everyone was lovely- I had so many offers for help with my case, an offer to help set up my scoot, a lady on the train said it looked like fun, the assistance lady was lovely and called it dainty, everyone in the taxi queue let me go ahead of them and one of them smiled and said he'd rather like one, and the taxi rank guy even asked whether I wanted to sell it to him- he got a definite no! I folded Poppy up and she fitted in the boot of a normal saloon taxi, along with a large suitcase, with no difficulty at all. SUCCESS!

She is now folded up, stood up in the corner of our hallway, with the seat on the bottom stair, battery is upstairs fully charged. I'm ready for more adventures tomorrow!!

I'm starting to think I should have bought one of these a long time ago- yes my bank balance hurts, but my legs are a lot less painful and the world suddenly seems far more accessible to me and much less daunting! Obviously it's very early days but at the moment Poppy is my absolute hero :)

Monday, 3 June 2013

Young and invisibly ill- becoming visibly disabled

Being a young person is tough- young people are often demonised and stereotyped, and I would question whether we have true freedom of speech- young people get called rude by old people all the time, but could we call a deserving old person rude? It would be a braver person than me who did! Young people are very misunderstood; a large proportion of society bases their opinion of young people on a small minority- and the rest of us suffer as a result.

Being disabled is challenging. It feels like the world wasn't designed for you. There are lots of barriers that you have to overcome and think of novel ways to work around. You encounter problems that the people immediately around you haven't come across before and can't necessarily help you with. You feel different.

The invisibility of some disabilities introduces additional difficulties. People don't know you're different, and the barriers to things you are trying to achieve aren't immediately obvious to those around you. If you want/need people to know there's a problem, you have to tell them- but being vocal about an illness you'd rather try to ignore and forget about can be tricky.

Put the 3 of these together and the likelihood of you and your situation being understood by the general public is pretty poor. Being young and disabled is a concept the outside world seems to struggle with. They expect young people to be fit and healthy. Make that disability invisible and those assumptions really complicate life. Walk (in great pain) onto a bus (or any form of public transport) and no-one would dream of offering you a seat, so you must endure the pain and balance difficulties of being stood up on a moving bus- normally with people bumping into you. I never sit in priority seats unless there are no other seats available because I know I'll have to offer my seat to the next perfectly healthy-looking, able-bodied relatively old person who gets on the bus, for fear of being glared at and judged. Would they cope with being stood up better than me? Probably, unless they too have an invisible illness.

I have just purchased a mobility scooter. My disability is therefore about to become immediately apparent to people. My illness will remain invisible but my disability no longer will be. There will no longer be the option to hide behind a 'healthy person' mask and hide my health problems from the outside world. I have used a wheelchair in the past, but not very often. I think a healthy- looking person in a wheelchair tends to confuse people, but I assume their assumption is that I have an injury- maybe I'm wrong. A healthy-looking person using a mobility scooter is likely to be even more difficult for people to get their heads round.

Using a mobility scooter makes it fairly obvious that you have a significant long-term health problem- you don't spend out all that money because you've stubbed your toe.. Most scooter users are old people, but that's because a majority of people with significant mobility problems are old. There is, however, also a significant proportion of the population, including me, who are young but struggle to get around, and getting around causes pain, increased symptoms, and is detrimental to their condition. Of course I have resisted the idea of getting a scooter. Of course I hoped I would suddenly miraculously improve, or at the very least the deterioration would stop. Of course when this didn't happen, I tried to ignore how bad things were getting. But when you've had several doctors say that your now-unbearable pain cannot be treated any more aggressively without causing increased drowsiness (which would be dangerous and unbearable in itself), you realise that you need to cause less pain to try to get things back under control- you have no choice but to face change.

This left me with 2 options: walk away from the life I have battled so hard for and retreat onto a sofa in front of the TV 24/7 with no foreseeable end to this lifestyle in sight, or get a scooter and carry on with life with slightly less strain on my body and see whether that helps my body to cope.

It was an easy decision really. Keep my dreams alive, reduce my pain, get my freedom back, be able to have more of a social life, less payback. Sounds pretty good to me. I searched the Internet for a scooter I'd feel happy using, and I've found it- I'll introduce him to you all when he arrives :) He's a bit different, and I like that. (At the moment it's a he, but I haven't decided for sure on a name yet, so gender is subject to change :P any name suggestions welcomed..!)

Am I disappointed to need to use a scooter? Of course.. Am I excited about the freedom I'll get by using my scoot? Yes! Am I going to face life head on, on wheels, and enjoy life to the full? Definitely!!

As a young person with an invisible disability on a mobility scooter, I'm expecting to get a few stares, and maybe have to face a few awkward questions, but that's not going to put me off from having fun, living my life, enjoying the freedom, and being me. I'll be the 21 year old zipping around smiling about my freedom- see you around ;)

Made me smile! :)