Wednesday, 22 October 2014

I stutter../ International Stuttering Awareness Day

It's not something I have discussed with many people face-to-face, but I now have a stutter. I hate the stammer that has entered my life uninvited, I hate the fact I no longer trust that my speech will be fluent, I hate that I get nervous that I will get stuck and the fact that that makes me not want to speak at times.

It has complicated life, and my life was frankly complicated enough already,

I first noticed problems with my speech quite a few months ago now. To start with the problem was very infrequent, and I was the only one who was at all aware of it. Even now, it's far more obvious to me than whoever I'm talking to, but it's now bad, at times, to the extent that it hampers communication. In my particular case, prolonged sounds appear in my speech- I will get to a word/sound and then be unable to get past the first letter/sound. I often try to re-start the word, the phrase or the sentence to try to get past where I am stuck, but it can be challenging; if those attempts fail, then often if I take a breath and try again it all flows (e.g. I often try to re-ssssss ss re-sss try to re-sss *breath* I often try to re-start the...). If I get stuck and then panic about being stuck, getting past the sound I'm stuck on can be very difficult. At times like these, I actually like people to step in and try to finish my word for me, because otherwise the situation seems increasingly horrific, and the rest of what I need to say is likely to be negatively affected if I get stressed about being stuck. Getting stuck once can quickly escalate to getting stuck repeatedly if I stress about it, particularly if I am tired (when my speech is worse anyway).

Struggling with speech can cause real problems. An example- when checking in at hospital or collecting a prescription, a standard question is to confirm the first line of your address. When you reply ffff fff ff, due to your inability to say 'Five', it's kind of tricky. This has happened to me a couple of times now and I tend to just laugh it off, I do get there in the end!

When talking to people who stutter, my general advice would be:
1) Maintain a normal amount of eye contact, don't look away or turn away when it's obvious someone is struggling (I realise this can be a natural reaction if it feels awkward). Eye contact shows that you're still listening and are still interested to hear what they have to say. The stutterer may look away if they feel awkward, but that doesn't mean you should.
2) Try to make the situation as relaxed as possible. They're likely to be far more comfortable about their stuttering, and may actually stutter less, if you don't make them feel under any pressure and keep the atmosphere chilled.
3) Unless you know that the person is definitely ok with it, don't try to finish off their sentences, as tempting as it may be. People with stutters often get frustrated that they don't feel heard because people are forever deciding what they're going to say for them. Give these people an opportunity to speak and be heard.
4) Don't assume someone is nervous simply because they are stuttering. I have speech difficulties when talking to my closest friends and family, in situations where I am completely relaxed and comfortable. The stutter is just as likely to be causing any anxiety as it to be caused by anxiety. People can be totally confident and relaxed and still stutter.
5) Try not to laugh or make fun of someone for the way they say things. Be aware that people can feel very differently towards their speech difficulties. Some people accept and embrace them and are completely comfortable stuttering openly. Others will try to hide it or will feel awfully self-conscious or will avoid speaking for fear of stuttering. Some may be ok with you making a joke about it, but many will not. Think before you speak- it could be a sensitive subject.. That said, if someone laughs about their inability to say something or makes a joke about it, it's ok to laugh!
6) Be patient! I understand it must be frustrating when someone is not managing to get across what they're wanting to say and you're busy and it's taking a long time, but please just take the extra time to listen. Sometimes it may be a bit harder to pick out what is being said, but please do make the extra effort. You may only come across one person in your day with whom communication is difficult, but that person will likely have a number of frustrating interactions struggling to communicate with a number of different people- please show that person that there are good people who are willing to wait and listen to them.

Speech dysfluencies vary massively in severity and affect people differently. My speech problems are relatively mild, yet I find it quite difficult to live with and accept. There are other people who get stuck on every syllable but are used to their speech being the way it is and are largely unbothered by it.

I hope my speech problems will resolve with time. I have been referred for a speech therapy opinion so I'm hopeful they will be able to help. If not, I hope I will learn to live with my stammer and it will bother me less over time. I hope I will reach a point where I don't fear situations in which I am put on the spot and have to speak for myself.

Communication is vital, and struggling with something as basic as speech has made me appreciate the importance of communication so much more. It is important to remind ourselves that what is being said is far more important than the way in which it is said!

Tuesday, 7 October 2014

Trigeminal Neuralgia/facial pain Awareness

Today, October 7th, is the awareness day for trigeminal neuralgia and other facial pain conditions. I have had facial pain for several years now and I don't think I can begin to explain how severe the pain can get at times. I get very sharp, electric-shock-like pains, particularly in my temples and along my jaw, in addition to vice-like aches in my forehead and cheeks.

Soon after the pain started, I was started on Gabapentin and referred to a Maxillofacial surgeon, with a tentative provisional diagnosis of Trigeminal Neuralgia.

Once seen by the Maxillofacial surgeon I was sent for an MRI scan to rule out a cerebellopontine angle tumour and look for compression of the trigeminal nerves. It came back clear.

The conclusion was reached that my facial pain and related symptoms are, in fact, likely to be as a result of my ME/CFS, which makes sense as I get nerve pain elsewhere.

Around the same time I was developing increasing problems with the sensation in my face, in particular problems with crawling sensations and tingling in my lips and tongue.

My dose of gabapentin was adjusted up and down a few times. Higher doses sedated me and caused horrible overwhelming exhaustion, low doses didn't really work sufficiently.

Eventually (about 6 months ago) I decided to take the plunge and change medications, both because my pain wasn't managed brilliantly, and because I had concerns that the gabapentin could be contributing to my abdominal pain.

I changed to Pregabalin (Lyrica) and eventually got up to the maximum dose (lower doses didn't work sufficiently, but each increase was vile, sending me into a very ill, semi-comatose state for a week each time). My pain seemed to be under control for a short while.

Recently though, my pain has flared up again and I suffer with headaches, stabbing pains and tooth pain on a daily basis. I have had a few occasions where I've been absolutely writhing in agony, it's awful.

I think people would think my facial pain is a minor inconvenience compared to my other problems, but when it's bad, it's far more than that. It affects my quality of life significantly and the severity during shock-like episodes is certainly as severe as any pain I get resulting from my other conditions. The pain is all-encompassing and simply cannot be ignored. I quite often literally gasp with the sudden intensity of the pain. And then it goes as quickly as it came.

I'm on epilepsy medications to dampen down my nervous system to try to control the facial pain. I wouldn't risk the side effects and interactions with other meds if the pain was bearable without, but it simply isn't.

Many people have lengthy, unpleasant (unnecessary) dental treatment prior to diagnosis. Most sufferers are on daily medications. People go through deep brain surgery or have treatments to damage the nerves involved to try to relieve the pain. If you look up Trigeminal Neuralgia, you soon come across the fact that it's sometimes known as 'the suicide disease' due to the high rates of suicide in this patient population (mainly before effective medications were available, but some even now) due to the pain's severity and the condition's unpredictability. These conditions are not trivial. It's not a case of a bit of a headache or a bit of toothache. The conditions are, without doubt, often life-altering.

Thanks for reading and please do help spread the word about these conditions.

Saturday, 4 October 2014

Return to Uni following medical leave

Returning to University following medical leave has been a roller-coaster of emotions.

Firstly, I'm elated to be back. When I suspended studies and left, I was terrified I would never be well enough to manage to return. When you get the opportunity to return to what you want to do, rather than living 'the sick life', it's awesome. I couldn't wait to see my friends, and was keen to feel part of things again. I thought things would feel more normal..

And then you get back and realise 'normal' really doesn't apply to you these days. I'm part-time, doing a phased return at the moment = abnormal. I use a mobility scooter = abnormal. I'm seriously chronically ill = abnormal. I'm in a new year group with all new people = abnormal. I can't physically do what I want, when I want = abnormal. You see where I'm going.. I realised just how abnormal my situation was when I had returned to Uni and was surrounded by healthy people my own age- they have SO. MUCH. ENERGY!

I, on the other hand, am severely lacking in energy. Living away from home, I'm now very reliant on friends- they have been utterly amazing, but it's frustrating not being able to do things for myself. I'd forgotten the amount of time I spend in a typical day staring at things just out of reach, wishing they would jump into my hand. Sitting in bed at the end of the day contemplating getting changed into pyjamas is horrific- you know you're about to flare your pain up to an extent that will make it difficult to sleep for hours... Not easy.

Being chronically ill is beyond hard. You are exhausted and it's exhausting- there is so much hassle trying to sort everything and juggle things. And then the more you think about it all, the more exhausted you get, and the more difficult it becomes.. Ugh.

Being back with all the normal life stresses reminds me how incompatible stress and chronic illness are. Stress really, really flares up my symptoms. But keeping calm and relaxed is easier said than done while facing huge challenges. I consider washing and dressing huge challenges, but returning to Uni means facing challenges much greater.

It's difficult being new to a year group. It's almost tempting to creep in, hide, quietly get on with things, then creep out (although creeping quietly on a whirring mobility scooter is fairly impossible). It's particularly hard when other people already know one another. It's yet harder still when you don't trust your speech not to play up, remembering names and faces is practically impossible, and you're feeling decidedly 'different'. You feel exposed and alone.

Thankfully, my group have been lovely, and I'm lucky in that I have support workers, which means I always have someone with me, so even from day 1 I was never really actually alone- perfect!

My symptoms, on the other hand, have been far from perfect. I always knew my symptoms would increase on starting back, so it hasn't come as a huge surprise, but it's hard. Pain, fatigue and nausea, among others, have all been severe at times, and it's difficult when you know that it's something you're choosing to do that's the cause of the increase in symptoms. I don't want to cause myself more pain, but I have to accept that doing what I want to do is going to cause my symptoms to be at an even higher level than they were when I was doing very little and resting a lot. It's just the way it is. My facial pain has flared up again (despite being on maximum dose Lyrica) and I now have tinnitus- oh, the joys.

I wanted to be much healthier when I started back than I have ended up being, but you have to hope for 1 thing, expect less and accept much less quite frequently with chronic illness, in my experience. My pain and fatigue levels are still fairly nasty, I still get dizzy and nearly faint a lot, and I still feel utterly rough. On a positive note, I (briefly) met my weight target a few weeks before starting back!!! It's only taken 3.5 years, haha. I've since lost around half a stone, but at least I had got up to where I wanted, so I'm away from the danger zone! The threats of tube feeding seem like a distant memory which is rather nice!

The other fairly recent improvements were in my speech and balance. My speech got a lot less glitchy when I started wearing my compression tights following my NMH diagnosis, and I started losing my balance less often. I had also been practicing my balance too, so would like to think that also helped a bit. Both have become significantly more problematic again since starting back at Uni and getting extra-exhausted, but hopefully will improve again once my body is freaking out less- fingers crossed. Difficulty communicating because of my stutter is really frustrating and embarrassing..

Having reached a severity I can't even bare to discuss while I was on medical leave, I'm scared about ending up back there. In fact, terrified may be more accurate. An experience like that stays with you, whether you want it to or not. I faced limitations only a minority of people my age have faced, and I can tell you that it's frightening, undignified and soul-destroying. I hope no-one reading this ever ends up in that state, and if you're currently severely affected, I really honestly hope things pick up for you and wish you all the best.

Everybody has been really lovely since I started back- staff, students, everyone. I couldn't have wished for people to be kinder or more accepting. I have, however, been asked 'what happened?!' multiple times; I didn't understand what the question was getting at the first time, before eventually catching on that people were assuming I was using my scooter having had some sort of accident. It's then a bit tricky explaining that you're long-term ill and can't really stand/walk anymore as a result. Not quite as exciting an explanation as they were anticipating..

It's all awkward really. How much do I tell people about where I've been? I'm more than happy to be honest with them, but I appreciate that chronic illness is sometimes an awkward thing to talk about. I don't want to sound moany, but I also don't want to make light of what was, and continues to be, a seriously difficult period of my life.

I'm also, understandably, getting people asking how things are going since starting back. The truth is, I'm not really sure. I'm doing very little yet it's really hard, symptoms are pretty vile, new/recurring symptoms are a concern, I'm having to medicate my pain more regularly due to the severity, and I'm struggling. But I expected that. The thing I don't know is whether it is sustainable. I honestly don't know whether my body can cope with this long-term.

I don't know whether things are likely to get easier or get harder. If things get easier I'll be able to increase what I'm doing and possibly get back to full-time by January, which is what I'm hoping; if things get much harder, I'll be left with no option but to suspend studies again, and then questions would have to be asked about whether getting through my course is a realistic aim. I've had a few appointments that have made me wonder whether I'm being a bit overly-optimistic about my chances of the return to uni working out, but we'll just have to see how things go. At the moment, things do, unfortunately, seem to be getting worse. The last week or so, I've been managing less and my symptoms have been getting significantly worse. It's really worrying and disappointing. I'm clinging onto the hope that it's just a flare and things will pick up again, but I'm honestly not sure..

So yes, that's the truth, although that's not necessarily the response that people are likely to get in person. I'm happy to admit that it's hard, but I like to give the impression that I'm coping, which I am- sort of. I don't know whether a relapse is imminent or not. I was asked in an appointment recently whether I could see crashes coming and the honest answer, even after 5 years, is still no, really. Sometimes, they just happen. I'm not ready- physically or emotionally, to face a serious crash, so I seriously hope it's a while before the next one inevitably happens!

To anybody who reads this because they are planning a return to uni following medical leave, my advice would be:
1) accept that it will be hard. Really hard. Get that firmly accepted before starting back.
2) have whatever you would normally use to get through flares to hand (painkillers, heat pack, easy meals etc), and be prepared to use them to help you through the first few weeks.
3) don't panic if symptoms are worse initially when you first start back, it's bound to be a shock to the system. 'If symptoms persist consult your doctor' or consider reducing your workload a bit.
4) prepare for your return in advance (if you've got time). Get your brain back to speed again by doing a bit of reading. Read over things that you will need to know. If you're well enough, build up your physical strength and stamina, even if that's just practising being sat up long enough to get through lectures. If it's all rather last minute, don't panic, just get yourself as prepared as you can be given your circumstances.
5) make sure those who will be supporting you- at home and at uni- are aware of where you're at physically and the challenges you're going to face physically, mentally and emotionally. They're going to need to be your cheerleaders, supporting you through when things get tough.
6) agree on a suitable timetable. Consider part-time options if you're not well enough for full-time.
7) get appropriate support agreed and in place. Think about DSAs, support workers etc. Disability advisors are absolute stars when it comes to sorting out all this stuff.
8) keep your fingers crossed (not literally- don't wreck your hands before you've started!). You can't control how your body will react, so it's all partly down to luck. Give yourself the best chance you can of things working out and then simply hope for the best- it's all you can do!
9) look after yourself best you can. It goes without saying that you don't want to risk ending up back on medical leave again.. It's not a sprint, it's a marathon- take things steady. Monitor how you're getting on and let people know early if alarm bells should be ringing. Stop and rest as necessary- missing a lecture is far less disastrous than relapsing from attending a lecture when not well enough. 
10) enjoy it!!! You're starting back because you want to be there- appreciate being back, remember how much you longed to be there while you were off (and remind yourself of this repeatedly when you're trudging your way through a difficult assignment..)!

I certainly don't regret starting back. It's great, I love immersing myself in my work and almost forgetting about the challenges of life for a while. It's amazing to feel like I have a sort-of purpose and a proper place in society and the outside world again. It's a relief to finally look in my calendar and see something other than medical appointments. 

It's hard (understatement), but of course that's the case! I only just improved enough to start back so I was hardly likely to be frolicking around doing a full-time timetable and finding it all a doddle. I'm doing a very reduced timetable and it's very much challenging my limits. But that's fine-ish, it's my choice, I want to be working at the maximum I can manage. I'm managing to study a little, and I'm enjoying it, which is great! Obviously I'd love to think I'll start to improve and will get back up to a full-time timetable and manage it comfortably, but that feels a world away from where I'm at at the moment, so whether that will happen remains to be seen!

I'm starting to realise that returning to uni is all well and good, but remaining at uni is the real challenge... Fingers crossed!!!

To everyone else with a chronic illness returning to studies or starting uni for the first time, I wish you SO much luck and hope it all works out for you!