Tuesday, 12 January 2016

NHS: Junior doctors strike

This is a bit of an essay, but I just want to have my say. I'm in the UK and we are lucky enough to have a National Health Service. The NHS means a lot to me as a patient. I have a lot of chronic conditions- the NHS has done a lot for me over the years, and if the government runs the NHS into the ground (which seems to be its intention), an insurance company wouldn't want to take me on. It'd be an inconvenience for many healthy people, but an absolute disaster for the thousands of people like me.

I am totally in support of the junior doctors strike. The team of junior doctors were incredible while I was in hospital. Some of them were always there each day when we were woken up, and still there when we were settling down into bed each night, including over weekends. The team of junior doctors took all the bloods, were on all the ward rounds, discussed diagnoses with family members, supervised students, made life-saving decisions, re-assessed patients whenever a new symptom emerged or there was a deterioration etc etc. The ward just wouldn't have functioned without them (I don't mean during the strike- consultants will provide cover- I mean they're an integral and important part of the running of the ward). 

The junior doctors weren't hardened like some of the older doctors, they empathised with us as patients, and you felt truly supported by them every step of the way. The kind smiles of support from them each day when they were walking up the corridor or on the ward round meant such a lot. One of the senior registrars (still 'a junior doctor') sat down with my family and I during visiting time a few weeks into my admission and discussed absolutely everything with us at length and answered questions- he was great. The first time I was allowed off the ward with no medical staff, several of them popped in when I arrived back to ask me all about my day and they were so genuinely pleased for me. On a day that was truly hellish from beginning to end, and I was really seriously struggling both physically and emotionally, one of the junior doctors came and sat with me and chatted to me and showed me pictures of her dog- it was exactly what I needed. On a day when the lady next to me was literally fighting for her life, a junior doctor was constantly by her side until she was safely transferred to ICU. Another day one of the junior doctors stayed past the end of her shift feeding one of the patients on my bay and chatting to us. A junior doctor came to me once when I couldn't move, my head was at a horrible angle and I was buzzing for a nurse- I couldn't communicate easily, but she spent the time establishing that I was in pain and then getting me more comfortable. A couple of them came and assessed me when I had sudden difficulties and persevered despite me having difficulty physically co-operating. A lot of these things are beyond their 'job description' but they did them because they cared about us, as well as caring for us, and also because they were working as part of a team- a team stretched to its limit, that sometimes has to help each other out; if one of us needed something and there were no nurses or healthcare assistants around, often a junior doctor or physio would step in. The government can't keep squeezing and squeezing and expect patient care to not be affected though. And it certainly can't expect morale not to be affected, and given the amount that is currently done simply out of good will, you wonder how long that will continue if they keep pushing staff the way they are and with all the cuts and conflict over contracts.

Before my hospital admission I never gave junior doctors or their role much thought, but now I have SO much respect for them, and having discussed the issues surrounding the contract with one or two of them, it's clear that money is not their motive, it's patient safety and care. The government are trying to remove safeguards that maintain safe working hours- as a patient that is seriously concerning. The hours they work are already antisocial, and with the number of unpaid hours many of them put in, they could actually earn the same amount doing the same hours in a very low paid job- given that these people have to deal with the responsibility of having lives in their hands, that's just so wrong. So I back the junior doctors wholeheartedly, and wish them the very best of luck in their discussions with government!

In terms of the '7 day NHS', I do agree it would be great, if we had the staff and resources, but we simply don't. During the 10 weekends I spent in hospital, I received very little medical input- they were simply keeping me alive until Monday each week. But I was still being closely monitored, mostly by the nurses, and towards the end I was well enough for some trips out during the weekend days (when there is no formal rehab) and that gave me some rehab that can't be done in hospital in formal physio sessions. That being said, physio at weekends would've been appreciated, if there were enough physios for that to actually be provided. I don't really think there was any problem with the amount of doctor contact I had at weekends- I still spoke to a doctor each day, so they were aware how I was doing and any urgent issues were dealt with and more senior staff involved as needed. Urgent and emergency care is provided at weekends already, and that's all that is actually needed and the best that can realistically be managed unless significantly more staff were trained and employed.

Infographics simply explaining the issues that mean I'll be supporting the junior doctor's strike on the 12th January. From goo.gl/uGWaVF:

Thursday, 31 December 2015

Update: new year and hospital stay etc

It's been a long while since I've sat and poured my heart out here on my blog, but a lot has happened in terms of my health in recent months, and as it's New Year's Eve (a classic time for some reflection), I think the time has come..

On 7th October I was very suddenly and unexpectedly taken very seriously ill whilst at university. It was a very scary experience, and one that I will never forget. I haven't taken a single normal step since then, and there has only been one day since then (22nd October) that I have taken any independent steps at all. Pretty terrifying..

When I was initially taken ill, I found out what it's like to be lying in Resus causing all the alarms to go off, and I never want to go there ever again. In recent months I have discovered what it's like to lie motionless, unable to move or communicate with the people around you. I know what it's like to have a doctor causing you very significant pain (to try to get a response) and be unable to even flinch. I've been through things that were fairly traumatic to be honest, and it's difficult to move on from them.

I was in hospital for 69 long days- nearly 1/5 of 2015. I met some amazing people- both fellow patients and staff. I was looked after brilliantly- not faultlessly, but brilliantly. The staff tried hard to do their best for me; there were things to do with communication, policies, discharge planning and lack of answers etc that frustrated me beyond belief, but the individuals involved in my care (physios, nurses, healthcare assistants, doctors etc etc) were mostly amazing. Unfortunately I was very broken, in a very far from straightforward way, so despite being sure in the first 24 hours that I'd leave 'fixed', it became clear in subsequent weeks and months that that simply wasn't going to be the case.

When I first arrived onto the neurology ward after being assessed, I was in a bad way. I had to be slid on boards between beds, it took 2 people to get me into a wheelchair, my jaw was seized shut, the only way to get anything into me was intravenously, I had limited mobility to even move in bed, my blood pressure was through the floor and I felt incredibly unwell. I've come a long way since then, but I still can't stand without triggering problems, I'm very tired and sleepy, and I lack independence.

The thing that I really struggled with was the indignity. You don't expect to suddenly, with no warning, need help with everything, including washing and dressing. Bed pans, hoists, slide sheets etc are just not things you expect to suddenly require. It's scary to be hanging in a hoist feeling complete out of control of both your body and your life. I'm glad I'm so small otherwise they'd have had to hoist me etc far more frequently. I found all that side of things enormously difficult- you just don't expect to become immobile and lack any independence at the age of 23. I'm so incredibly grateful to be largely past that stage!

I'm currently a full-time wheelchair user, and it has made me realise how incredibly fortunate I had been to have about 20m of mobility and the ability to climb 1 flight of stairs. Both were with difficulty and pain, but to be back in that situation now would be incredible. Places aren't particularly accessible when you have limited mobility, let alone when you have none..

I think with significant illness, it's always difficult not to look at all you've lost. Chronic illness steals a lot, particularly when it worsens over time. I had a lot to be thankful for before all this happened, and I don't think I realised that enough. But at the same time, at the moment I'm looking at the challenges my recent health problems have caused, and I realise it's only natural. Before I mourned my healthy life, now I mourn what had become my 'new normal' too.

We're now entering 2016 and that's scary. Some of the challenges I have faced during 2015 have been so unexpected and unimaginable that it's hard not to be a little concerned about what 2016 could throw at me. It's not going to be an easy year, as I still have my rehabilitation to go back to, and with all I've been through when trying with physio so far, it seems highly unlikely that it will be a breeze!

I need to get used to standing again, redevelop some balance and learn to walk again. I also hope to regain greater control over my body and my symptoms with the help of my medical team. In october I learned to stand and take steps and got to the point of taking independent steps on one day, but then had a setback and had to start the process of learning to stand and take aided steps again the next day. Over subsequent weeks I eventually reached a point where standing was making me too ridiculously unwell, and I was discharged from hospital as a full-time wheelchair user, but able to make unaided transfers a majority of the time. I want to get back to the situation I was in before all this happened, and I know it's going to be a gruelling and painful process, with plenty of ups and downs!

Yes, 2016 scares me. But it's coming whether I like it or not, and I just have to hope that this time next year things are looking remarkably different. For now, I just want to sincerely thank all my friends and family for their amazing support during the challenges of 2015, and thank you in advance for helping me through the challenges to come. I'm incredibly lucky and grateful to have such amazing people around me, and I honestly couldn't have coped with all that life has thrown at me recently without you. Thank you for the little messages of support, for the shoulders to cry on, for the hugs, for the cards, for the chats, for keeping me in touch with normal life, for celebrating my successes with me and giving me distractions from all this rubbish. To literally everyone who has touched my life to any extent in recent months- thank you so so so much!

PS I know I haven't discussed diagnoses etc, but that's a post in itself as it's all complicated, and to a large extent the labels basically mean 'we know you're very ill and debilitated but medicine doesn't know enough to explain how or why yet'- much like my CFS really.. I do have explanations, which I'm sure I'll share with you all soon, but there are also lots of unanswered questions, and we don't know to what extent my pre-existing conditions (CFS/NMH) are influencing things. I seem to have now accumulated nearly a whole alphabet of diagnoses- eek..

Sunday, 1 March 2015

55 things learnt from 5.5 years ill

5 years ago today, having been ill for 6 months, I was diagnosed with ME/CFS, which slowly went on to totally wreck my life, with some help from a few other conditions along the way. But I'm now rebuilding my life and am managing fairly well. My quality of life is relatively good, and I'm happy. Obviously I live knowing that a severe relapse is possible at any time, and I'm struggling a bit still with prolonged sitting up, so much in the way of walking and standing will have to wait, but things are definitely good in comparison to where they were.

What I've been through is pretty much documented on here. I've already mentioned the severe pain, the immobility, the loss of independence, the nausea that nearly resulted in tube feeding, the struggle to walk, the struggle to sit up, etc etc.

But that's not what this post is about. The struggle was, and is, horrible, but I've learnt a lot during the half-a-decade I've been diagnosed (and I know how ridiculously cheesy that sounds- I'll start calling it my 'journey' in a minute). Here's 55 things learnt from 5.5 years ill:

  1. The worth of a person should not be based on what they can or can't do, but who they are as a person.
  2. Every individual is important and their life, and quality of life, matters.
  3. The small things in life are worth taking note of- we're surrounded by amazing things every day; even when very sick and debilitated there are things to admire and be thankful for.
  4. The people around you are your greatest asset. Friends and family can be truly amazing.
  5. It's sometimes surprising who stands by you and who drifts off into the distance when things go wrong- the ones who stay by your side are true friends to be treasured.
  6. You can get through more than you would ever think possible. When you're given no choice, you can survive.
  7. Chocolate doesn't solve all your problems, but it does normally help.
  8. Music can be incredibly soothing.
  9. Bad times pass. Some times it just takes longer than others.
  10. Good times pass too, but it's important not to dwell on that- enjoy it while it lasts.
  11. Live life while you have the chance.
  12. Health is fragile, and precious.
  13. The true value of health can only be appreciated once it has been lost.
  14. There are still a lot of barriers to living life with a disability- both physical (e.g. stairs) and societal.
  15. Some people think you must be thick if you're on wheels.
  16. Lack of independence is difficult to tolerate.
  17. Some people take on new caring responsibilities incredibly graciously, others may be more begrudging at times.
  18. It is hard not to feel enormously guilty when reliant on others.
  19. It is possible to be happy and have fun even when feeling sick and in pain.
  20. Sometimes illness and pain gets you down, and you just have to wait for the dark cloud to pass.
  21. Being sick is tough; looking after someone sick is tough.
  22. Knowing when to accept help can be difficult.
  23. Taking a step back and establishing a slower pace of life is hard.
  24. Behaviour change can be incredibly difficult.
  25. Resting rather than fighting on is challenging.
  26. Any anniversaries or significant dates can be reminders of the passing of time and can stir up emotions.
  27. Accepting an illness is a constant battle.
  28. Pets can be the biggest comfort at times.
  29. Pets' love is totally unconditional- and they love you even more if you have food.
  30. Understanding that others in your life may well struggle to understand what life is like for you can be difficult.
  31. Once you are visibly disabled, some strangers seem to think asking whatever questions they like about your condition is perfectly appropriate.
  32. It can sometimes be difficult watching other people do things you can't do.
  33. Some doctors are absolutely amazing and work with you to manage chronic conditions, but some can be a nightmare once you're 'complicated'.
  34. 'Interesting' is not a word you want your doctor to use about you.
  35. Doctors don't have all the answers.
  36. Some medications cause more harm than good- it can be a battle to work out if meds are right for you, and if so, which ones.
  37. Random people suggest weird 'cures' frequently, and people often make harmful suggestions with the best intentions (e.g. 'it would do you good to get some fresh air').
  38. Some girls have a scarily lacking perception of what constitutes a healthy weight and will compliment your figure even when your weight is very dangerously low due to illness.
  39. The media can be frustrating and incredibly misleading, sometimes reporting dodgy papers, and ignoring real scientific advances.
  40. Patient communities can be surprisingly fractious- the ME/CFS community frequently insult one another over definitions and what to call the condition(s).
  41. Some people think wheelchairs/scooters are inherently a really bad/scary thing, but they can actually be very enabling and allow people to get out the house- admittedly wheelchairs can be very scary with the wrong person pushing!
  42. The majority of people really do intend to be helpful and really do want to do the right thing by you.
  43. Being ill results in lots of paperwork and letters.
  44. Asking for necessary accommodations normally results in feeling like a huge inconvenience.
  45. Fatigue can be at least as disabling and intense as pain.
  46. Dealing with the relentlessness of symptoms is challenging.
  47. Nights can seem to intensify suffering.
  48. During nights awake Internet-company can be very comforting.
  49. The shared understanding among, and support of, fellow-ill-people can be surprisingly helpful.
  50. Even if you feel alone, there is always someone else out there going through similar ordeals.
  51. Opening your world up to other people can be daunting at times, but can mean more people understand your story.
  52. Putting feelings into words can be surprisingly cathartic.
  53. It's important to rest before crashing; once it has happened the damage is done.
  54. Gentle hugs help.
  55. Ill health is clearly a negative experience, but positives can come out of it.
It's a strange year to reflect back over, because the emotions I've been through have been intense. It is so nice this year to not be looking back and simply seeing how much worse my condition has got though, because, for once, I've actually had 6 months of improvement, and am better than I was this time last year!!

Sunday, 1 February 2015

One year on...

One year ago yesterday, I officially suspended studies due to drastic deterioration in my health. I'd already not really been in uni much for several months, but that was the date I signed on the dotted line and made it official. My body was broken, and I finally made the decision to put my health first and give myself the chance to heal. Despite the fact my body had basically made the decision for me (studying simply wasn't possible), making it definite and official and long-term was heart-breaking.

But a) I had no choice and b) it was the right decision.

I wish I had known then how much better things would be now, one year on. One of my greatest fears was that I would never be well enough to return to uni. But I did. Things are still very difficult and the future is still uncertain and a little bit terrifying, but I'm managing as well as I hoped I would be at this point. Realistically, I wasn't likely to be any better than I am now. I would've obviously liked a lot more, and would love to be more mobile, with fewer symptoms, but I'm back at uni full-time and just about coping. I feel at ease with everything and my symptoms are just about bearable with the medications I'm on. That's about as good as it was ever going to be in only 12 months, particularly bearing in mind the inevitable flares, and the fact my illness had basically been progressive for over 4 years.

There's still a long way to go, but I am incredibly grateful to be where I am. 1 month ago I had no idea whether I'd manage to return to full-time uni. 6 months ago I was terrified about how I'd cope with starting back at uni 3 half-days per week. 8 months ago washing my hair was a major, major challenge and I spent a majority of days in pyjamas and a majority of time in bed. 10 months ago I could barely sit up. 12 months ago I was leaving uni and feeling desperately unsure of what the future would hold. At every stage I have battled and persevered (even though often that was with pacing and rest), and eventually prevailed.

Uni continues to be a challenge, but I am enjoying it. I am facing new challenges with my speech. Independence is still a distant dream. A recent fall (and grabbing a door I was falling towards- black fingers- big mistake!) proves that remaining upright is still a considerable challenge. Walking very short distances is still very difficult and takes a lot of energy and concentration.

But I'm lucky. Really, really lucky. I can sit up, I can study, I can go outside, I can be in busy places, I can wash and dress myself, I can tolerate my symptom levels, I can get around easily on my scooter, I am happy. I have faced severe ME and, to an extent, come out the other side. All those going through the dark times, I vividly remember what it's like, but the light at the end of the tunnel will seem so much brighter because of the darkness you have been through- so get those sunglasses ready! I know I'm only a bad relapse away from ending up back there, but I can't let that haunt me and taint the good times I'm having. If it happens, it happens, but until then I'm going to live life cautiously, but as fully as I can, and appreciate and enjoy every fantastic detail.

A matter of months ago, life felt like a painful ordeal. But I have a pretty good quality of life now, and that means the world to me.

Medical update

Continuing from where I was last time I updated- my severe headaches did turn out to be the Fludrocortisone so I've been off that ever since.

Speech therapy has been going ok, but my stammer has been very variable and has been truly horrendous at times. I had one week where communication was a massive struggle. I'm finding techniques helpful though and am managing to communicate ok most of the time.

I've had an appointment with my main consultant in which we discussed how I was getting on and also my stammer. My consultant says that stammering isn't something that's typically seen in chronic fatigue, and in his opinion it's most likely to be due to the understandable stress and anxiety caused by trying to do my course with my health problems (particularly as my MRI a couple of years ago was normal), but because my Speech and Language Therapist has raised the question of neurological causes he's going to advise my GP to refer me to Neurology, just to get it checked out. I don't feel particularly stressed or anxious, and my stammer seems to vary of its own accord rather than when I'm more stressed, but I'd rather it was due to anxiety/stress than there be a neurological cause (because the conditions mentioned are rather serious). But we'll see.. Whatever the cause, I just want it to go away, or at least improve. I am, thankfully, coping a bit better with the difficulties it causes now that I'm getting used to it, which is a relief.

I'm quite relaxed about the prospect of a referral to neurology, because although it means another new doctor and more prodding and poking, it will rule things out if nothing else. There has been talk of referral to neurology before so it seems to make sense to get checked out.

I'm eating fine, I'm sleeping well and things seem fairly stable. I would class that as success! I'm grateful to my medical team and thankful things have picked up to the extent they have, plus obviously hopeful things will continue to improve!

Friday, 19 December 2014


I've been meaning to update for a while, but just haven't got round to it, so sorry about that!

Things are going fairly well really. I'm actually on the train to home-home from uni-home at the moment. Excited to have made it through my first ever uni term major-relapse-free! I've barely missed anything (*proud face*), but admittedly I have been part-time this term. I'm even more excited by the prospect of time-off though. It's certainly needed!!!

The beginning of my first term back after medical leave was undeniably incredibly difficult and pushed me absolutely to the limits of (and at times way beyond) what I could cope with physically. I survived though, my ability to flare without massively relapsing reassured me somewhat, and I was incredibly lucky that my body managed to make some improvements and over time fought back less, which is an absolute first! The middle of the term things seemed manageable, and I'd even got marginally beyond prefixing manageable with 'only just'. Just as things were starting to feel doable and I was feeling a bit more reassured and a bit less fearful of a relapse (and less haunted by the memories of how bad relapses can get), things started getting harder.

Towards the end of term, I had a really challenging few weeks, feeling like my body was flagging significantly, and feeling in need of a break! My speech in particular has been really difficult at times, and I've had days where basically every sentence has been a struggle. I find that pretty difficult, because I used to be relatively eloquent and prided myself on my ability to argue a point well; now I get people who see me stammering excessively and fighting with my words who presume I'm mentally incompetent and that's very difficult when the words are in there trying hard to get out! I'm using hand gestures and non-verbal communication a lot recently to try to get me through. I've never been so grateful for my ability to nod, shake my head, point and do a thumbs up and thumbs down, my heart absolutely drops less often now, because I know I will find a way to communicate even if it's not neatly, efficiently and the way I'd like. My second (most recent) speech therapy session was really helpful and I've learnt a few techniques to help me speak a bit more fluently and they do help, but they don't yet come at all naturally. I do feel a bit more in control though and less panicked now that I have some techniques to turn to as needed. People are generally fairly understanding/considerate about my speech difficulties, but unfortunately not everyone is. Some outright laugh, some smile in an amused way, some presume you're totally thick (particularly as I'm visibly physically disabled), some look panicked and/or perplexed, but most people are more concerned about reassuring me that it's ok (which it might be ok for them, but I'm not ok with it) and are patient and encouraging. Negative reactions are difficult, but mostly people have been great- my friends have been amazing with it, not batting an eyelid at all (I do have pretty awesome friends).

The other thing I've been having massive problems with very recently is headaches. They have been utterly awful, practically unbearable at times. I've spent the last few days speaking with various people trying to get them sorted and under control before leaving the area for a couple of weeks. I was quick to blame my newest medication- Fludrocortisone- and stopped that [edit to add: I did check with my doctor that it was safe to do so, and it was as I have only recently started on it]. 3 and a half days after stopping it the pain has lessened somewhat. I do still have a headache though and my facial pain is not as well controlled as usual. It's hard to prise things apart when things get so complicated. They thought the new medication might have caused my blood pressure to sky-rocket and that was the cause of the headache, but when tested it was still only 108/45, so on the low side if anything. The next suggestion was that I might have had a change in my glasses prescription, so I went for an eye test today (on my birthday!) to rule that out- there has been a change in my prescription but not significant enough to be causing severe headaches, thankfully all looking healthy except dry eyes though. So the mystery still isn't yet solved really. I'm thinking it's either the medication and it's taking a while to get completely out of my system, or it's my facial pain. I had already been considering changing my facial pain medication again, but I'd been hoping to not have to go through that too soon, but if it doesn't settle I think that'll have to be the next line of action.

The medication I mentioned stopping- Fludrocortisone- was intended to help my Neurally Mediated Hypotension and stop me going faint; it was hoped that this would help my other symptoms too. It possibly did help with my lightheadedness, but it has also made me feel more rough and tired than normal I think. I certainly haven't felt significantly better on it, so it wasn't overly disappointing to have to stop it, apart from in the respect that I had expected great things from it, which didn't happen.. Maybe there will be other things to try which will suit me better.

I've also started melatonin since last updating on here, and that was a really, really good decision. It helped massively with my sleep, shifting my sleep pattern significantly in the right direction. It also helped me feel a bit better during the day (because I've actually had some sleep), nights are less frustrating and days are longer and more productive, so all good! I wish I had tried it sooner, but it wasn't one of my top priorities to discuss with my consultant until I was wanting to get back into lectures, and that wasn't going to happen without a shift in my sleep pattern. I haven't had any real side effects from it at all (it's naturally occurring in the body anyway, so it's less likely to cause side effects than most meds to help with sleep); the only slight side effect I had was feeling a bit overheated after taking it- even that has settled down though.

I'm feeling in a good place mentally right now, a bit weird about the passing of time with it being my sixth birthday and Christmas ill, my fifth of each with a diagnosis, but mostly I'm just enjoying and looking forward to spending the time with friends and family. I'm delighted with how far I've come and feeling quite at ease with life really. Yes, I still have constant symptoms, some of them are out of control at the moment, and life is quite a challenge, but I'm so lucky to have amazing people around me, and I'm incredibly lucky to have clawed my way back from the depths of severe illness (even if I have only got as far as moderate- next stop mild please!).

As we reach the end of the year, I'm not sure what to make of 2014. It's been a year of absolute highs and lows. I've had months of illness of a severity I could never have accurately imagined until it happened. I've faced devastation when I had to take time out from uni, further devastation when I relapsed even further soon after, months where I was challenged continuously physically and emotionally, but also the absolute high of starting back at uni, being back with my friends and returning to some vague sort of 'normality' (if there is such a thing), and other happy, enjoyable events throughout the year. This time last year I knew I was in for a very difficult year as my body was an absolute wreck; this year I'm not sure what to expect- I'm hoping things will go smoothly as I transition from part-time back to full-time studies, but I'm also aware that I'm still very ill and things could fall apart at any point. I know that full-time studying may not be very compatible with my state of (lack of) health, but I won't know without giving it a good try. I will be very glad to put 2014, along with its difficult memories, behind me, and I'm looking forward to a fun-filled and rest-filled festive season!

Wishing everyone a fantastic Christmas time and hoping 2015 is a great year for you all!

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.