Friday, 22 March 2013

In pain, exhausted, but still going..!

My life consists of pain at a level I can cope with interspersed with pain that is literally unbearable- right now I've got the latter. My right arm is currently out of action. It HURTS. I've taken my extra painkillers and I can now just about cope as long as I don't move it at all. Seriously not good..!

Anyway, in the days since I last posted there's been quite a bit going on.

I had another really rough weekend last weekend (slept both days nearly all day because I was so rough and exhausted) so am hoping this weekend will be an improvement!

I've had a busy few days since but have been coping relatively well (..ish), although I'm getting a lot of pain in my hands and arms from challenging my weakness.

I had a doctors appointment on Wednesday which was thought-provoking. I was there about my swollen abdomen which he examined again and I'm now on some regular meds for it (more tablets.. yayy...) and thankfully they do seem to be helping. I'm having a blood test next week to rule out a possible cause, but it seems fairly certain that it won't be that. He was far more concerned about my weakness and everything else that's been worsening recently though- he's writing to my consultant to ask whether everything is consistent with CFS or whether I ought to be seen by neurology for an assessment. He said he doesn't suspect anything at all life-threatening but it just doesn't seem normal, and I totally agree. I'm sick of the prodding and poking but I'm not totally convinced my diagnosis is right at the moment so I'm happy to go ahead with some more tests if they think they're warranted, in the hope that they'll either show something up that more is known about, or it will give me more confidence in my CFS diagnosis at least. I trust the consultant I see for my CFS and I wouldn't want to lose him and end up with someone I didn't get on with or who wasn't so supportive, but I just need to be reassured that there isn't something that has been missed that could be under treatment. It's just trying to find the balance between over-testing and under-testing, which is a lot trickier than it sounds.

I'm in a ridiculous amount of pain. I'm exhausted. I'm weak. I'm on way more meds than I'd like to be on. But I'm still going....! :) and it's the weekend :)

Maybe I'm pushing myself too hard, maybe I'm expecting too much from my body, but how can anybody be sure of their capabilities if they don't push boundaries and test their limits..?

Saturday, 16 March 2013

Chronic illness: the challenge

Chronic illness is a tricky thing to deal with- both physically and emotionally.

Illness is always a challenge- whether it's a small challenge e.g. a cold, or a bigger challenge of something like pneumonia. Any reduction in health affects quality of life. It makes us suffer to some extent. Sometimes they make us consider our mortality. Sometimes they complicate things a little or a lot by meaning we need to take medications or look after ourselves more. All of us have experience of illness of some degree. A minor acute illness will probably cause few disruptions and normal life will resume very quickly and will just necessitate a few days taking things easy, feeling a bit under the weather. A major acute illness will normally mean a few trips to the doctors or a short stay in hospital with some aggressive medical treatment to make the person better; people normally rally round the sufferer, there's lots of support and an understanding that things are bad, but recovery normally comes around quite quickly.

Chronic illness is a totally different matter. It challenges the individual and the people around them on a completely different level. With a chronic illness the problem doesn't stop, the end simply isn't in sight, and by definition a chronic illness can't be cured- there isn't a 'quick fix'. Some chronic illnesses can be successfully managed and brought under control with medical treatment or lifestyle management but many others can't, the symptoms simply don't stop. Not getting a break makes the situation all the more difficult to deal with. If you knew that one day a week you would get a day of respite to do things and have a break from the pain and suffering it would make it a lot more bearable, but that's not how chronic illnesses work.

Physical disabilities (excluding chronic illness) such as the loss of a limb etc are different again. There is no constant illness, often no ongoing symptoms. People can see and understand your problem. Doctors can't make it better but you can make the necessary adjustments in your life and things are predictable. I admit I have no experience of this type of disability and I'm sure it's not easy to have limitations with absolutely no prospect of them going away, and everyone seeing and knowing that you are disabled and have health problems must bring its own problems in terms of employment and how you are treated by society. There is the advantage though that you can plan ahead, know what you are capable of, work out ways around things and people are more aware of the type of help you might need. Lots of people with these sort of disabilities can achieve great things- just look at those in the Paralympics and the constant news stories about double amputees climbing mountains and walking across the North Pole etc. There is the expectation that disabilities should be defied.

These sort of disabilities are similar to chronic illnesses in several ways. They force limitations on the sufferer or mean that things have to be done differently. Most will require medical appointments long-term. There are emotional challenges with both due to changes in lifestyle, limitations and differences in your body and the way you view yourself and others see you.

Chronic illness is also different though in a number of ways- it's more unpredictable. There is physical suffering and there are ongoing symptoms. There isn't the option to battle against your situation, seem heroic and achieve amazing things. There were very few chronically ill people in the Paralympics. Those with significant chronic illnesses don't climb mountains. Our achievements are far more ordinary. Chronic illness sufferers win battles every day but they are small things- walking a bit further than normal, staying standing without feeling sick and dizzy, sitting up for longer after a relapse, managing a whole day at school/Uni/work- things that healthy people wouldn't consider an achievement at all. Our achievements certainly aren't worthy of TV news stories or newspaper headlines but we are also pushing our bodies to the limits and achieving the best we can- our limits are just very different.

I don't mean this to make us sound brave, and I'm not saying it to get any sort of recognition, I just think chronic illness is largely forgotten by society. We don't get the publicity that most visible disabilities get. We're disabled but we're also ill. We do have to 'learn to live with it' but its difficult when you have symptoms every day that constantly change. If you had an ear infection one week, a chest infection the second week and constant migraine the third week and food poisoning the fourth week would you get to the end of the month and say it's fine because you're used to being ill now? I doubt it.. You do adapt to the level of pain you're in and get used to the other symptoms to some extent- but it still hurts, you still feel ill, you still notice the twitches and the cramps and the nausea and the weakness. You do have to learn to accept it but there's a constant grieving process with every loss, and every relapse brings about new losses or highlights previous losses and the grieving process starts again. Acceptance, the final aim of the grieving process, is only ever a transient thing- everything seems easier when you're able to accept your 'new normal' but you never know how long the stage of acceptance will last before the cyclical process begins again and the feelings of loss, unfairness and frustration prevail.

Most people with chronic illnesses- CFS, lupus, MS etc- look relatively well. There are few signs that the person is suffering. It's therefore important not to judge anyone by their appearance. Don't assume someone is healthy just because they're young. Don't expect someone to leap up and offer their seat because they look healthy. Be considerate to everyone- you never know what battles people are facing.

Friday, 15 March 2013

Alone in a Busy World

Sometimes it strikes me how remarkably alone one can feel in a world so full of people.

I don't mean that I feel in need of company, I mean that because each of us has had such a unique life-experience so far, it's difficult for any of us to truly understand the life of anyone else or for them to understand ours. Our experiences shape the perspective from which we see the world, and having each had different experiences, we all see the world and everything in it slightly differently. In the same given situation, we'd all view it slightly differently, approach it with different preconceptions and abilities, and come away having learnt different lessons or developed different opinions. Of course it can be argued that this enriches our culture and our different experiences and talents allow us to compliment one another and achieve great things, but it also means we are alone with where we are in life. Each of us is unique and therefore each of us forges the pathway of our lives alone. We walk alongside one another, but we can never walk exactly in one another's footsteps. We can comfort one another along the way, but we can never truly understand what someone else has been through or where they are heading. We can see and appreciate similarities, but no-one else's life will ever be identical to our own.

Perhaps this could be seen as a depressing thought, and maybe to some extent it is, but I also think it is empowering. Our lives are our own. We build our own pathway through life. We can go in whichever direction we choose. No-one else has been in our unique position to know what is the right decision for us, only we can choose what is right for us at that time, in that place, given where we have been.

So look to the future and decide what is right for you without looking round wondering what everyone else is doing, because they are making the decision that is right for them whereas you need to make your own decision about your own future, because no-one else is stood with you, no-one else faces the same decision as you, because no-one else has the same past, and no-one else faces the same future.

Sometimes we yearn for someone to know how we feel, to understand everything about our current situation. We want someone to stand by us and say 'I know how you feel, I understand everything, I was in the same position and did X- it was the right decision'- this person simply doesn't exist. There will be people out there who can understand aspects of your life, your past or your situation, take comfort from that, but always remember that you are unique. Just because something was right for someone else doesn't mean you should blindly follow.

So yes, we're all together on this planet, and we're surrounded by people every day, but we are also standing alone each and every day, working out our own path through life.

That was my little philosophical musing, lol. In terms of today- I'm feeling ok. I rested this afternoon because I was really tired but it's been a long week. My tummy still feels like I've eaten a horse (although I did actually have minced 'beef' today so perhaps it's right). My hands are really painful and my face is tingling incessantly, but that's pretty standard at the moment. Certainly glad it's the weekend :)

Thursday, 14 March 2013


"I'll write to your GP to let him know that we haven't really had any success" has admitted defeat..
He doesn't think he can particularly help me and I think he's probably right. I don't think I'm actually well enough to be trying to improve my strength at the moment. It's frustrating but I knew that this might be the case- it was worth a try though and I'm going to continue trying to improve things myself by continuing trying to work on my grip strength at home.

I'm meant to be starting physio with the CFS team anyway but I'm on a waiting list. And the waiting list is 3 months long.. Sigh. The joys of waiting lists.. I wouldn't mind but I've sat on this same waiting list before and I was only discharged from them in October after 18 months of being seen. Ah well. Gives other sufferers a chance to be seen though- I suppose I can't really nab all the appointments indefinitely ;)

I just want someone medical to be confident that they can do something, ANYTHING, to help and make things a bit more stable and manageable. But we don't always get what we want in life and we just have to deal with it.

CFS is complicated. A lot of people you come across, even a lot of medical practitioners, know very little about it. Some of them will be honest with you and ask (the good ones- my physio did actually fall into this category) and others will blag or try and get you out the door ASAP (the not-so-good ones!). I don't mind people not knowing and not having answers if they're honest with me. I do mind people trying to act like they know about something they don't. Trust me, if you're a medical professional (this applies to anyone actually) faced with someone with a chronic condition and it's not something you particularly know about- the patient will know about it- ASK THEM! They might not know the exact details you need but they'll certainly give you a good idea, and can tell you about it from their perspective at least. Don't assume they're the same as someone else with the same condition either- most chronic conditions are on a very wide spectrum of severity and there can be very different symptoms; 2 people with the same diagnosis can have a very different experience of the illness- don't jump to conclusions or make assumptions, ask whether the same is true for the individual in front of you. They're a person and everyone is different.

My abdomen is still uncomfortably swollen and I'm still nauseous. I've got new mid-back pain and had a new stabbing pain behind my left eye earlier (severe but short-lived). I've got aching facial pain with a feeling of pressure (feels like my face is going to explode), facial tingling and one side of my tongue is hypersensitive. My hands are painful and I feel exhausted.. A slightly worse than average day overall.

Wednesday, 13 March 2013

Abdo angst and 'the future' fears

Things haven't been great.
I've got really significant abdominal problems at the moment. My abdomen is swollen and really uncomfortable and I feel really nauseous. It feels totally wrong and I feel really not right in general. I saw my GP on Monday to sort out my prescriptions but he picked up that I didn't seem myself so I said I really wasn't feeling well and ended up explaining that I was feeling sick and my abdomen was sore etc. He examined me and has taken me off all my deficiencies meds for a week to see whether they're causing the problem and I see him again next Friday. So far not taking the tablets hasn't really helped. He also noticed my weakness when I was trying to sit up after lying down for the examination- he was shocked and said it was a real eye-opener for him; he seemed genuinely concerned. He asked whether my consultant was aware and I said that I'd mentioned my weakness in the past but think that I'm often misinterpreted as meaning weakness as in tiredness, when I really mean true significant loss of strength. I opened up and explained that nothing seemed right recently and I seemed to have so many new symptoms and so much seemed worse and there didn't seem to be an obvious explanation- I think he could totally see where I was coming from. Hopefully between me, him and my consultants we'll work something out.. It certainly feels to me like we're missing something.

I've got physio tomorrow and haven't been able to do any hand exercises for nearly 2 weeks now because my hands have simply been too painful, so I'm expecting very little, if any, progress.

I had a difficult conversation with someone earlier which has made me reflect a lot today upon my future and how realistic my aims are. I'm certain about my dreams and aspirations about where I want to be, but the uncertainties in my life (i.e. my health), over which I have little-no control, are likely to have a huge influence on whether these can become a reality. After considerable thought on the matter, I can't see that making any decision now regarding what may or may not be the case in the future makes any logical sense, particularly given the uncertainty I am facing at the moment. I appreciate that my avoiding thinking far ahead due to my uneasiness associated with the realisation that my dreams may never become a reality sometimes leads to a lack of realism about my situation, but there's no way of knowing what lies around the corner for any one of us. There's no way of knowing whether I will be significantly better, similar or significantly worse in a few years time, but anyone could develop an illness of any kind at any point and they don't dwell on that, so why should I plan my life taking into consideration the worst possible scenarios? I know I have to be realistic about things but hope and aspiration are what keep me going, and no-one has the right to take those away from me. Only I can know when walking away is my best/only option. I'm more than aware that I've gone downhill a lot in the last few months but personally I see that as a reason to try to take each day as it comes rather than dwelling on what could lie in the future.

Sunday, 10 March 2013

Feeling ouchy, and a little grouchy...

It's been another challenging weekend.
I just feel completely drained.
I've pushed and pushed and pushed all week and now my body is fighting back. I've fallen back into the classic boom-and-bust/push-crash cycle that CFS'ers are meant to avoid. But how else are we meant to get anything done?
Gosh I hurt. I can't actually think of one part of me that isn't sore. And trying to keep my eyes open is an actual effort. I'm 21 for goodness sake, not 91.
I hate weekends like this, and I hate them even more when I have work to do and deadlines looming. I'm desperate to prove that I can do this, that I can be successful, that I am still capable- but I'm not sure whether I'm trying to prove it to them or myself anymore.
But I will do what I can today, and will get some rest, in the hope of being able to face tomorrow with a smile on my face.
I don't understand why things are so bad, and I'm still not sure exactly how bad things are.. After my collapse last week I'm feeling more nervous than normal about doing things.
I see my doctor again on Monday to see what my consultant has recommended to treat my vitamin d deficiency, but that really is the least of my problems at the moment. I don't even know what else to discuss with him- it becomes so difficult to prioritise when it feels like your whole body is falling apart. I just want it all to stop. I spent basically all day yesterday lying in bed resting with my eyes shut- I've got so much I should have been doing.. It's really frustrating and I feel really let down by my body.
I know everyone has challenges in their life but I just need a break from the constant onslaught of CFS. I just want a day of feeling well to make things seem easier again.
But I'll take a deep breath, and do my best, which is all I can do, and tomorrow will undoubtedly be another day and will hopefully bring less pain and more energy :)

Oh and happy Mother's Day to all mums out there! I'm sure you all do a great job, just not quite as good as my Mum ;) Love you Mum :) xxx

Sunday, 3 March 2013

My weekend

It's been an interesting weekend..! Mostly it was really nice and relaxing, and it was lovely to see my family again.
My diagnosis anniversary on Friday was actually fine in the end- my dog gave me lots of cuddles and made me smile and laugh so there were no tears :)
I've played a lot of music whilst I've been home which has been really therapeutic. I'd forgotten how nice it is to just get lost in music and forget about everything. My arms are now rather sore but definitely worth it..!
Had a bit of a nightmare on Saturday but I'm already finding it quite funny looking back. I went into town to do a bit of shopping with my mum and brother and came over not feeling well. To cut a long story short I ended up lying on the floor of the shopping centre.. A lovely security guy came and there were lots of offers from strangers to help/ring an ambulance etc (which I obviously refused). After a lie down (in the main stretch of the shopping centre- not in the way at all..), once I was well enough to sit up, I got helped into a shop for a sit down and they got my mum to collect me from the loading bay and I was helped out to the car. Safe to say our nice shopping trip didn't go quite as planned..! Really heartening how lovely everyone is when something like that happens though- lots of complete strangers offered to help :) (Apparently one of the people I turned help away from was a nice looking doctor- should have let him help after all ;) haha). Certainly wouldn't recommend a shopping centre floor in terms of somewhere for a comfy lie down by the way..! Need to be slightly more mindful of my limits in future.. It's easy to wrongly think you're well enough to do something that you're not- particularly when your symptoms are in a phase of keeping you guessing somewhat- which at the moment mine most certainly are. And it's particularly easy to be overly optimistic when you're in a good mood, which I now am again, at last.
It actually feels like a weight has been lifted off my shoulders now that my diagnosis anniversary has passed, which is all a bit stupid really.
Even though things clearly didn't go completely to plan over the weekend and I'm obviously disappointed that my limits are currently lower than I had thought, I feel much stronger emotionally than I have in a while.
Physically on the other hand, I don't feel great. Once again eating is causing a problem and with my weight being so low it's a bit tricky when your body is trying to reject food. I'm feeling pretty weak, and my face sensations are just not stopping at all. I'm not actually feeling as exhausted as I would expect though given that my body clearly isn't too happy at the moment, so I'm really grateful about that :)