Wednesday, 27 February 2013

Am I tired? Well, no, not really..

As a CFS patient I think it's a normal experience to be asked 'so do you feel tired all the time?'. The answer is kind of yes but not really. I am always fatigued but my fatigued is not the same as your tired.. I might say 'sorry I can't, I'm too tired' sometimes when really what I mean is 'I'm feeling seriously ill, it's just not possible', which probably doesn't help with the confusion, so I thought I'd write a bit of an explanation about tiredness, chronic fatigue and CFS- the differences.

Tiredness is very different from the fatigue of CFS, I can't really describe it. It's not just the severity that's different- the 2 are qualitatively different. Tiredness after a busy day can be a pleasant tiredness, an easier-to-sleep tiredness, a job-well-done tiredness, whereas CFS fatigue is never pleasant. It's really hard to describe but it feels much heavier, much foggier, more dense. It's more like when you're ill with flu and everything is such an effort and you feel weak and sore and exhausted- it's that ill exhaustion, but even that doesn't feel the same. If you've ever taken a medication that's made you feel dreadful and really drained and rough I think that's the closest I ever felt to CFS tiredness pre-CFS, but I doubt most people have had that same reaction to a medication (I'm not meaning medications that make you drowsy- drowsiness is something totally different- CFS rarely makes me drowsy). I don't 'get tired', I start the day fatigued and end the day fatigued, I do get tired but not normal tiredness, although I can't honestly remember what normal tiredness feels like now, but for a long time I remember noticing not feeling it, and I'm sure I'd recognise it if I felt it again now. Some of my pain is also closely linked to my fatigue, as are some of my other symptoms such as my nausea and weakness; if I get 'tired' by the end of the day, my speech gets less clear, I feel physically sick, I'm in agony, my walking isn't predictable and my balance is off, which isn't quite the 'tiredness' most people experience at the end of a busy day.

Chronic fatigue is persistent exhaustion that goes on for months or possibly years. It's a symptom. It's not the same as chronic fatigue syndrome. People who are described as, or who describe themselves as, being chronically fatigued are not necessarily CFS sufferers, in fact unless they have other symptoms they certainly aren't. People, even CFS sufferers or CFS doctors sometimes say chronic fatigue instead of chronic fatigue syndrome but this is completely wrong- the 2 are not synonymous. Chronic fatigue is a symptom of a vast number of conditions, only one of which is CFS.

Chronic fatigue syndrome is a specific diagnosis, albeit a diagnosis of exclusion with plenty of scope for misdiagnosis and differences in the underlying condition of those diagnosed. But my point is that people aren't diagnosed with CFS simply because they are tired all the time, and only a minority of those that are tired all the time will have CFS. A CFS diagnosis is reached by taking a clear history from the patient, a huge raft of blood tests to rule out other possible causes of symptoms and any other investigations indicated by the specific presenting symptoms, and the diagnosis is then reached IF the clinical criteria for diagnosis are met which includes having at least several other symptoms in addition to fatigue affecting everyday life. If diagnostic criteria for CFS are not met, a diagnosis of Idiopathic Chronic Fatigue should be given (unfortunately this isn't always the case in practice and people are wrongly diagnosed with CFS, altering the statistics and messing up the results when these people then participate in medical research... Fantastic..). It's likely that those currently falling under the diagnosis of Chronic Fatigue Syndrome will be found to actually belong to several different subsets with differing underlying abnormalities- we've been grouped together based on a symptom-based clinical diagnosis rather than a fully objective positive blood test after all- but only time and significantly more research will tell what these subsets are and who belongs to which. We've been shown to share significant biochemical abnormalities as a patient population, but it's still my belief (and it's a commonly held belief) that there's a lot of variety among those diagnosed with CFS, which explains the difference in morbidity and the differing responses to different interventions. 

Anyway, I've gone off topic slightly (not like me at all... ;) lol) but all I was basically wanting to explain is that when I say 'I'm tired' I'm unintentionally lying and misleading you all- the English language is just lacking a word to adequately describe the way I do feel, so tired seems like the easy option. The other thing that I really want everyone to understand is that despite the slightly misleading name CFS isn't about being tired all the time- there's so much more to it than that.

Monday, 25 February 2013

Illness on top of chronic illness

I did nearly call this post 'sick with a cherry on top' but that really does conjure up a rather stomach churning image so I thought I'd better not. There, the thought of that's made you all feel nice and nauseous now hasn't it, welcome to my world ;)
So yeah. I've got a cold/sinusitis. Not fun and now I'm hoping and keeping my fingers crossed that my CFS doesn't relapse as a result.
Getting a simple infection is one of the greatest fears of a CFS patient because a simple illness can cause a monumental relapse completely out of all proportion to the illness that triggered it. And once you relapse you have no idea when you'll get anywhere near back to where you were pre-relapse.. Not fun. My consultant says that it is because any infection causes your immune system to go into overdrive and given that my condition is related to problems with my immune system and inflammation, it's no surprise that my illness has a bit of field-day.. Much appreciated dear body ;) oh and vaccinations have the same immune-system-stimulating effect which is why I've chanced not having the flu jab this year because of problems in the past. But it's one of those situations where you really can't win because if I get full-blown flu I'll be in big trouble..!
The actual cold/sinusitis isn't really that bad, it's the fear of it triggering my CFS that's worse. I'm perhaps more tired than normal- I slept all afternoon- but that's hardly unusual for me at the moment. My headache is a bit different, but to be honest it's quite nice to have a change ;) All the touching my face to blow my nose isn't setting off the nerve problems in my face too badly yet (but maybe I shouldn't speak too soon..!) The congestion is obviously not normal for me but I had horrific allergies for years so I can deal with congestion and sneezing.
If you could all keep your fingers crossed and send CFS-relapse-preventing vibes in my direction it would be much appreciated. But honestly, I'm fine- just doing a good Rudolph impression..!
And a picture that made me smile:

Sunday, 24 February 2013

Upcoming anniversary: the emotional roller coaster

Yesterday I wrote a rant about being only days away from my CFS diagnosis anniversary. Today I feel much brighter about things, but I thought I'd share it anyway to give people an insight into how I felt and how I'm likely to feel again at times over the next few days:

It's already hitting me that I'm less than 1 week away from the '3 years on from diagnosis' milestone.
It hurts. It really hurts. I'm not sure I can even begin to describe how it feels to know that you've spent 3 years knowing what you're battling and yet still feel no further toward recovery than you were then. My chance of a full recovery actually reduces with each passing year of illness, and I'm certainly showing no signs of moving in that direction at the moment. I'm scared that I'll never not feel exhasted again but also scared I'll never experience normal tiredness again. I'm scared that the pain, tingling and numbness I'm developing is due to permanent damage to the nerves, and my face will never get normal sensation back.
It's difficult to know that a chronic illness has messed up what are meant to be some of the best years of your life..
A lot of my friends have only ever known me sick, which is scary and horrifying and totally breaks my heart. The fact they've accepted me for who I am now is amazing, but I wish they'd got to meet me when I could have run around and messed around carefree with them. I wish they'd known me when my smile was always genuine rather than often just being a brave face. I wish they'd known me when our lives were far more comparable and we had the same worries at the forefront of our minds.
I feel far from acceptance at the moment; I feel upset, frustrated and cheated. I can't move on properly with my life until I have accepted a 'new normal' but I can't accept that this is how life is going to be from now on. I'm desperate to get better, to be able to do everything I want to do, when I want to, to the best of my ability, and why shouldn't I cling to that when no-one can say for sure that it won't happen?
I'm tired of going to every medical appointment with that glimmer of an expectation that they will make things significantly better, that they will find something they can treat, that they actually do have that magic wand hidden that they've claimed not to have for the last few years.
I'm sick of taking at least 70 tablets and 28 inhalations every week and am scared I'll never get off them all. I'm sick of medical people talking about my distant future as if this condition will still be with me. I'm sick of constantly worrying about everyone else worrying about me. I'm sick of worrying about whether worrying will make me sicker. I'm sick of thinking about what I want people to know and what I'd rather they didn't. I'm sick of trying to look healthy in front of people to avoid them asking questions. I'm sick of people feeling awkward around me because they don't know whether it's ok to ask about my illness or because they don't know what to say or how to say it. I'm sick of feeling different. I'm sick of constantly needing help with things. I'm sick of always having a to-do list so long that just reading it exhausts me too much to be able to achieve any of it. I'm sick of always having my phone with me because I'm worried I'll be taken ill. I'm sick of constantly planning everything in advance. I'm sick of spending more time at medical appointments than having fun with friends. I'm sick of having people constantly watch over me but they can't help and I don't always know whether they're on my side. I'm sick of feeling like people are missing out because of me or that I'm letting people down. I'm sick of worrying about my next relapse- when it will be and how severe. I'm sick of constantly having to choose between what I want to do and what I need to do. But most of all I'm just sick and tired of being sick and tired.
3 and a half years of illness seems like a very long time. I'm glad I didn't fully appreciate the meaning of 'chronic' when I was diagnosed.. I was 17 when I first got ill- I was naïve and I'm glad I was. I thought I'd be fully well in a few months at the most. I never could have imagined this.
Yes my MEversary is just a date- but it does prompt you to look at the bigger picture, and with things the way they are at the moment, I don't really like what I see.
So yes, this is a rant from beginning to end, and no I don't apologise for that. I know there are people FAR worse off than me in the world, but right now my little world is far from how I'd like it to be, so I'll have a rant and a moan if I want to have a rant and a moan because this blog is mine and is to do exactly that. And I'm sure there are CFS'ers out there can relate to some of that..!
Any CFS'ers out there- I'd be really interested to hear how you deal with your diagnosis anniversaries..? Do you find them difficult?

So yes, they were my thoughts and feelings yesterday- soo happy and positive ;) Today I'm actually feeling alright about things. Physically I'm not feeling too great today- I'm in a lot of pain and have got a mild sinus infection (fingers crossed it stays mild...!!) and just feel exhausted and run-down, but I feel hopeful and have lost the haunted-by-my-diagnosis feeling that I had yesterday. I know this week is going to be challenging but today is not the anniversary so there's no point it spilling over into other days if I can help it, so today I'm going to look after my physical health and try to prevent a relapse from this infection and will be trying to stay positive :)

Thursday, 21 February 2013


Today I'm posting about the helplessness patients and those around them face.
As a patient, it's difficult to know that sometimes, you're just fighting a loosing battle- you'll still be ill whatever you do, and unlike other illnesses, the harder you fight against CFS, the more ill you get. At times you feel completely helpless. I once asked my consultant what to do when I ended up bed-bound, and he said you have to do the only thing you can do: lie there and rest until you improve enough to do anything else. Most other illnesses there would be something you could do or something you could take to improve the situation, but with CFS it's just a case of waiting and working with the illness instead of constantly fighting against it. I still struggle with this often- it's natural to want to fight against something that is destroying your sense of self, making your life so difficult and limiting what you can do. Constantly testing my limits and pushing boundaries doesn't help the situation though.
I also appreciate that for those around me- my family and my friends- it can be quite difficult to stand by and watch me suffer and struggle. You can't make me better. You can't take my illness away. You can't stop me hurting- physically or emotionally. But you all help every day by standing by me (or more likely sitting by me, lol) and listening and treating me like anyone else and including me and helping me feel 'normal'. Some of you do even more than that- you look after me when I'm really unwell and make sure I've got food and meals and something to drink and my medications- you shouldn't have to do this, but I really do appreciate it, and that really does help massively- I wouldn't be where I am today without the kindness and selflessness of my friends and family. Thank you doesn't really express my gratitude but there aren't any better words I can use.
Alongside this there is also the helplessness of my doctors and other medical people helping me; they were trained to treat and cure people. They can't cure me. Some of them are used to this and accept it, others of them look you in the eye and you can see that they desperately wish they could do something to make me better, to take away my symptoms. They wish they could give me the answers that I long for. I still desperately want all these things, but it's not their fault, and I try not to expect too much from them, but it's difficult. The first time a doctor looks at you with that look of genuine hopelessness is difficult and it doesn't seem to get any easier. I don't blame my doctors and I hope they never feel guilty that they can't make me better- they help so much by just being there through it all and helping me in any way they can. I hate not being an easy patient, and I hate that I can't currently be miraculously cured, but I'm also incredibly grateful to both the medical people working with me and those researching my condition and hope that the wait for answers isn't too long, or my body will heal itself anyway.
A debilitating chronic illness doesn't just affect the sufferer, it affects everyone around them. It can make friendships stronger, but it can also make them more difficult, more one-sided and more demanding. I thank all those of you who have helped me through the last 3 and a half years and hope the coming years will bring the light at the end of the tunnel. Yes we might all be rather helpless in the face of chronic fatigue syndrome, but appreciating that and shrugging it off as 'life' is important in moving forward. So let's all be helpless but hopeful together :)

PS- Wow, I've now had 500 page views from across 9 different countries! Thanks to everyone who has read my blog so far!

Wednesday, 20 February 2013

My medical team

I had an appointment with my GP today (not good news- surprise surprise- more on that later) so thought today would be a good opportunity to introduce you to my medical team.

My medical team varies over time, but at the moment includes my: GP, nurses/nurse prescriber,  pharmacists, consultant immunologist, maxillofacial consultant and musculoskeletal physiotherapist (+ I am about to start with an ME/CFS therapy team physiotherapist). In the last year I have finished seeing my: occupational therapist, dietician and respiratory medicine consultant.
I'm really lucky to have a fantastic medical team and I actually get on really well with all of them, which is quite a miracle, because I'm not very keen on doctors and medical-type people (who is!?).
Having a good medical team helps because you feel understood and can see that you are getting the best possible care, even if there isn't currently the information available to be able to cure CFS or treat it effectively. They monitor your symptoms to check for anything new occurring and give you advice on activity management when new CFS symptoms arise or provide medications to try to reduce symptoms that get unbearable. I believe it's important for someone to be checking on your symptoms regularly because after a couple of years of symptoms changing and evolving it can become rather easy to just put everything down to CFS without considering alternative explanations (I had a chronic cough 'due to CFS' for 2 years before it was eventually practically stopped by higher doses of inhaled steroids for asthma). It's reassuring to hand your consultant a list of your latest symptoms and for him to say they are all typical of CFS; you then know that the likelihood is that they are due to CFS but your doctor can check whether you've been tested for other conditions that could cause any of the new symptoms to make sure nothing has been inadvertently missed.
Sometimes, this leads to new discoveries. My vitamin d, iron and folate levels were checked a few months ago, they had been fine when they were checked the previous year, but I was feeling particularly unwell so my consultant decided to check a few things- they were low- my vitamin d level in particular was severely low (which is quite common in the chronically ill).
I started supplements to treat the deficiencies and had a blood test to check how my vitamin d levels were going just over a week ago- today I went for the results. Despite fairly high dose treatment my blood levels were basically the same (slightly decrease!), so now I'm on 10,000 units per day (5,000% of the RDA) which is normally a weekly dose. So that's just great... My doctor was really nice though and I had a chat to a couple of the pharmacists who I get on well with (the other patients were slightly taken aback when they were greeting me and chatting away!)- one of them had been talking to another pharmacist to see whether there was anything she could recommend to help me which was nice of her (although she said last time that I was probably keeping her in a job with the amount of medications I'd been tried on recently, so it works both ways.. ;) lol). I certainly felt like everyone was totally on my side, which really helps when it feels like a constant battle with your health.
I know most people with CFS don't get anywhere near the level of support I get and I certainly don't take the support I get for granted- I've struggled with no support at all in the past and it makes an already very difficult situation even worse. Medical people may not be able to cure you, but by sharing their medical knowledge with you and helping to manage symptoms it makes the condition much more bearable.
Anyone out there with CFS and no medical support, get some. If you're in the UK ask for a referral- contact an ME charity and ask for advice on where you can access good medical care- you shouldn't, and don't, have to face this alone!!!
I've been really pleased to get such positive feedback about the blog so far- I'm glad people are enjoying it and finding it informative :) Do let me know in the comments if there's anything in particular you'd like me to post about!

Monday, 18 February 2013

Difficulty sleeping

Yep, seems somewhat ironic that a condition that causes such profound fatigue causes such significant problems with sleep... In fact becoming too fatigued by CFS actually worsens my ability to sleep, and apparently that's typical among patients with my condition.
In the early stages of CFS it is not uncommon to sleep A LOT (hypersomnia) but once you get into the chronic stage, often sleep becomes elusive. Sleep reversal is a very frequent problem, but allowing yourself to become nocturnal becomes a bit of a problem if you want to stay in touch with the majority of society- although it's fine if you only ever want to talk to hamsters... (Hmm, tempting...) It's often impossible for CFS patients to get to sleep until the early hours of the morning, but then often they can sleep into the afternoon the next day (if they don't have other commitments), this is a really frustrating problem, and is one that can easily become a cycle that is difficult to break. Often before holidays I get warned by someone medical to be very careful not to let my sleep pattern slip.. And it normally does... And I normally have difficulty getting it back to anything like something normal..
My biggest problem in terms of sleep is normally pain. Pain is one of the hardest symptoms to ever ignore. I'm on epilepsy meds to dampen down some of the ridiculous messages going on in my nervous system, but even with these my pain isn't very well controlled. I have codeine that I take as needed, but it's not something that I want to be reliant on  in order to get any sleep because of problems with tolerance and dependence (tolerance, dependence and addiction have very different meanings by the way, but that's a whole separate matter).
The emotional consequences of the illness can also interfere with sleep at times. If you're worried about getting all your work done, worried about which medical appointments you've got coming up, worried what they'll say at said medical appointments, worried how you're going to manage to do X, worried how your symptoms are going to be tomorrow, worried about the future etc, its no wonder you can't get to sleep very easily. Surprisingly this is normally not the main reason I can't sleep though.
I can't honestly remember whether I ever got over-tired when I was well and couldn't sleep as a result- I think normally I just wasn't tired enough. Getting over-tired is like when you get past the stage of feeling hungry- you're still hungry, in fact you're even more hungry, but you lose the desire the eat eventually, but it feels great when you finally do. With CFS you get overtired to the point where you can't sleep, and the longer the problem goes on, the more tired you get, the worse you feel and the harder it is to get the much needed sleep. Thankfully after a few sleepless nights your body does eventually relent and you do fall asleep- but not before you've had some frightfully difficult days feeling dreadful.
Another thing is that sleep with CFS is not restorative. You never wake up feeling refreshed and like you've had a really good nights sleep, no matter how long you've slept. There have been sleep studies on CFS patients showing that we don't go into deep sleep for long enough, so the physiology backs up how we feel; although knowing we're right to feel rubbish doesn't make feeling rubbish feel any better..
So yes, CFS is a pretty stupid illness really- it makes you tired but stops you sleeping, and even if you do manage to sleep, you wonder why you bothered..
.. And apologies for rambling and any spelling mistakes etc- I'm writing this at 5 to midnight because I can't sleep- I wonder how I thought of the topic...

Sunday, 17 February 2013

The Balancing Act

Given that my blog has had 125 views from across 6 different countries in its first 24 hours (wow!) I thought I'd give you all something slightly more interesting to read than just a list of symptoms..
I thought in this post I'd describe the balancing act faced by those of us with chronic illnesses.
Some days you hurt and feel ill but your illness only crosses your mind on occasions (I better not do that, it'll cause problems.. etc) whereas other days there's no getting away from it- it's a constant battle- you spend hour after hour lying in bed in agony, wondering when the pain will reduce enough for you to get some much needed rest or sleep. You get cross with yourself for doing too much, or you get frustrated because you've done nothing out-of-the-ordinary as far as you can see. You start questioning why you feel like you do, why no-one can tell you the exact reason for this happening, why you can't have something better understood that doctors could cure or treat with a few tablets, why you should take the tablets you are on if you still feel like this, when will things get better, why is this happening to you.. but they're all unanswerable questions.
The vast majority of days fall somewhere between the two, and this is where the real art to managing a chronic illness lies. It is these days that you have to judge what you are capable of, find a balance between activity and rest, guess whether doing x will cause extra symptoms tomorrow, choose whether you need to get extra rest because of something you need to be relatively well for in the future.. It's tricky, you improve with time and practice but still make plenty of mistakes, resulting in more than enough of the bad days described above. It's hard to stop yourself constantly thinking: 'I know I'll hurt but it'll be worth it', particularly when you're already in pain so 'what difference is a bit more pain going to make?', which is a natural but unhelpful response (although it is totally necessary to push the boundaries to have a life sometimes).
I'm at a stage at the moment where I'm not getting the balancing act quite right. I'm doing too much and constantly activating my condition long-term causing extra symptoms to accumulate. Part of this is due to my own denial (it'll be fine, I'll be fine, I could do it before...), part is due to a worsening of my condition and me continuing at the level of activity I could do before, and part is life (I'm studying and although I have support I have a timetable to stick to, and I can't get too far behind).
It may seem sometimes like I'm not making an effort to do something, join in or go somewhere, but the truth is that I just don't have enough energy spare.. I don't enjoy being in bed doing nothing but for me it's sometimes a necessity. Please do always give me the choice though, it's always better to be invited :)

The balancing act when dealing with a chronic illness (in her case lupus) is described much better by Christine Miserandino here:
Thanks for reading! :)

Saturday, 16 February 2013

An Introduction

This is my first ever blog post so I thought I'd introduce myself and the purpose behind this blog.

So first the purpose:

I have been struggling with my illness recently and wanted a space to vent about it without unloading directly onto individual friends and family and stressing them out. This way if you want to know how things are going, you can come on here and see rather than me constantly whining at you. This isn't going to be all downhearted (I hope!), it will also be about my general thoughts about things, cute/inspiring/motivational things I come across and of course will be positive when things are going better. I will warn you now that it will, however, probably all be chronic-illness focused. I may mention things about my life, but it's important to me that this blog does not identify me if certain people go looking on the internet for more information about me, therefore I would appreciate if friends and family don't include my full name or anything identifying in any comments on here- thanks! If other CFS sufferers find this blog and it helps them feel less alone then that's great too :)

Secondly, about me (and my M.E.):

I'm 21, have been ill for about 3 and a half years now and was diagnosed almost 3 years ago with 'Chronic Fatigue Syndrome' (also known as M.E.- Myalgic Encephalomyelitis). I also have asthma, but this is fairly well controlled now most of the time. To give you some idea, my current CFS symptoms include:
  • fatigue (very different from normal-person-tiredness)
  • pain (nerve, muscle and joint- nerve pain in my face and legs is particularly severe)
  • weakness (reduced grip strength, leg weakness causes difficulty walking)
  • muscle tightness on exertion (leading to muscle and tendon injuries from walking too far)
  • changes in sensation (numb fingertips, fizzing/tingling feeling in my legs and face etc.)
  • nausea (sometimes barely able to eat for days as a result)
  • speech problems (difficulty finding words, get stuck on sounds)
  • balance problems (particularly in crowds)
  • difficulty being upright during relapses (can become impossible to sit up for long without feeling dizzy/passing out)
  • difficulty recovering from infections (they often cause relapses in my CFS)
These symptoms get worse following activity (a phenomenon that is believed to be particularly indicative of ME/CFS, known as Post-Exertional Malaise)- this response is often delayed causing 'payback' and difficulty judging what you are truly capable of, as opposed to what you are just optimistically hoping you are. The severity of symptoms on any day is unpredictable and the fact they simply never stop is difficult.
Despite my CFS I am continuing with my education, and am trying to retain something that vaguely resembles a social life. I try to stay positive, although some days that's harder than others, and believe that each day may not be better, but it is always one day closer to recovery.

..I think that'll do for blog post number 1! I'm not quite sure what I'm doing with Blogger, so bear with me while I work it out.. and do feel free to post questions or ideas for blog posts etc in the comments (anonymously if you wish). Thanks!