Turning point

I haven't written on this blog for quite a while now. This is because it was pointed out to me that some of what I had written was inappropriate and hurtful. I have since deleted the particular posts (although if I have missed any, then sorry) and have said to myself that should I return to the blog that it would take a turn back to the purpose it was intended for - to educate and inform people what it is like to have CFS/ME - and not to be the place I turned to let out my feelings when at my worst. Some people have suggested I step away from the blog, but others have suggested I keep writing and I have thought about this a lot. I have decided to return, but to set a rule to myself that I will never write when I know I'm at my most poorly, and let out any feelings constructively way before they get to the point of destruction.


And so, to start afresh slightly today's post is going to be on things that have helped me with my symptoms and their consequences. I take so many supplements and medications that it is probably a bit difficult to say exactly what makes the most difference, but put together they seem to work. Working out which is most effective scientifically is not possible right now as it may require removing an important medication from my collection and may send me back into a relapse, which I can't afford right now!


And so firstly, here are some supplements that I take:

• vitamin D - this was suggested by a rheumatologist I saw last summer who found that I had low vitamin D levels in a blood test. Not necessarily related to CFS/ME but it has been linked to muscle function so maybe it has some importance.
• l-carnitine - this supplement was recommended to me as one that may or may not help. I'm not entirely sure what it does, but I think it may again have a link to muscles.
• co-enzyme Q10 - this supplement was recommended to me by a CFS/ME consultant on the NHS but I don't think it has any clinical backing. It seems to have had some effects though! Possibly linked to the production of energy in cells?
• avoiding dairy food - not technically a supplement, more of a subtraction, but it's to do with diet so it's going here. I haven't eaten dairy since I first got ill almost 5 years ago. It made such a difference! I am mildly lactose intolerant anyway and somehow the CFS/ME exaggerated it so this was definitely a good move.

Secondly, here are the medications I take. I know some people are reluctant to take drugs but I have really found these helpful:

• hydroxyzine - (brand name Atarax). This is an antihistamine but I take it because it has a side effect of drowsiness, with the aim of it helping me to sleep. It doesn't make me drowsy but it does make me feel more relaxed and has made so much difference to my sleeping patterns.
• vitamin b12 - I have put this here because I have it administered by injection by a nurse instead of taking tablets. These have been taken weekly so far but I think that is due to go down to fortnightly. I believe these have helped a lot too, but having no original b12 deficiency, their prescription was a little unorthodox.

And lastly, behavioural things I do to look after myself:

• focus on keeping calm - any kind of stress or excitement can increase symptoms and so I focus throughout life on keeping calm and in control. Not easy of course but recognition of these emotions in itself makes a difference.
• limited exercise - I hate this one, I would love to go running but it has made such a difference to limit my exercise to what my body can do without complaining.
• proper rest breaks - again, I don't like this either because at 20 I want to be out there doing things but consciously stopping for breaks gets me through the day.
• making all activity more energy efficient - this involves some conscious thought and self awareness, and so maybe talking it over with a friend or family member may be helpful. What can I do to make that activity less effortful? (e.g. sitting down while cooking).

I think many people with CFS/ME have their own concoction of pills and supplements but I thought that this may give people some idea of things they can try if they are new to this. Unfortunately a lot of these cost money (either shop bought or prescription charge) but I think you can get help with prescription charges if necessary.

"When I'm on my knees, I'll still believe"

These last few weeks I have ventured to join a student study group that is run by a nearby church, not the church I usually go to though. They haven't felt betrayed and have accepted me into the group, much to their credit.


So far I have been to two bible studies, both on separate parts of Ephesians. Today's study focussed on the first half of Ephesians 3, and Paul's (previously Saul) calling as a Christian. This study has demonstrated to me that the path that you think you should be taking, just by assessing yourself and knowing your skills, isn't necessarily the path God has called you for. Just as Saul thought that routing out all the Christians and having them killed was the best way to serve God, I may have a completely wrong view of my direction and skills (I haven't been nor plan to kill anyone though!).


This has helped me in the face of so many limitations to know that even if you don't have the skills or physical strength for what you think you should be doing, God will give you a path you can do, and give you what's necessary to complete it. There are so many things I would like to do for God right now, and it has puzzled me that God would prevent me from doing these things for him but this says to me that it's OK to not be doing these things because God will provide some even more amazing things for me to do that will help more people and will give him more glory.


It also says to me that I don't have to do this alone. Sickness induces such immense loneliness in people, and chronic illness simply equals chronic loneliness. But God has commanded us to not fear or be anxious because He has said so many times that He will be with us through absolutely everything, and that we are capable of anything because He can equip us to complete anything.


"I can do all things through Christ who gives me strength".

Bit of an upward turn.

After a few more negative posts, I feel it is time for a more positive note. It is almost Christmas after all!!

I was able to get an appointment with a CFS/ME specialist last Tuesday (after pushing for it with my GP) and what a difference it has made! For the first time when speaking to a health professional about my condition, I felt they knew more about it than I did! He asked relevant questions, and practical things that I had prepared to ask his opinions about (such as special exam arrangements for university) he asked me about first, demonstrating that he had a knowledge of the sorts of things I could need help with. He also suggested a number of other supplements, as well as setting up a series of vitamin B injections, which I have heard from some people to be beneficial.

I could still find fault with this system I'm sure but today I won't because of the relief I feel after finally getting some help and advice from someone who understands my condition!

In other news, my university term ended just over a week ago and I am firmly back home preparing for Christmas. I've managed to do too much shopping with Mum but it has been so nice being home that I feel it's worth it. I feel a little more optimistic about next term, having just about managed this last one but there are maybe some aspects I need to work on, such as organisation, as I have 6 deadlines next term, although I hope to have 2 of those completed before I go back in January. Maybe 2014 will hold better things than 2013.

"So when your hope's on fire, but you know your desire..."

I'm a big Mumford and Sons fan, but unfortunately their songs aren't the most cheery. I felt that this quote fitted my predicament right now, but unfortunately I have no opportunity to be a "Hopeless Wanderer" - I don't need anyone to "hold me fast" as I've got an illness that does that anyway.

What on earth to do with my life??! I am faced with such uncertainty that I have forgotten how to plan. Events come and if I'm not up to it, they go unnoticed. As do I. And at the end of the day, what can I do with my life? All my dreams and hopes are being destroyed, and it's the little things that keep me reminded of my loss. I used to love singing. I was never that great but I loved singing at church so I could really worship God but now I sing one hymn at church and that's me exhausted. Music seems to require such stamina, and I really don't have any.

I had always thought that university and a fantastic, satisfying job were in store for me, but now I have no idea. Everything I can think of appears unattainable. And this isn't just me being unduly pessimistic - this is the reality. I want something to get me out of the bed in the morning, to make me hope for the future. So that's my desire, a bit vague I know. That used to be achieved by my degree but I'm not sure it is any more.

Acceptance

These last few weeks leading up to the Christmas holidays have led to me asking a few big questions about my life. Do I want to stay at university? Should I stay at university? And then the opposite questions which should be asked, as I have found that sometimes the answers don't match up.

Do I want to stay at university? - I think yes.
Do I want to quit university? - Also, I think yes.
But do I want to leave university? - Not really.

The estate agent who we rent our student house from is asking us to confirm whether we will be staying in the house next year. The first step was deciding whether to stay at the house here or go back into halls, as that choice is basically friends vs practicality and better health. I decided on the house, feeling that having friends nearby was a useful thing but the decision wasn't an easy one.

I then realised why the decision wasn't easy - I wasn't sure about staying at university at all. I was meant to sign a contract for the house last Saturday and I couldn't even make it through the door of the estate agent before I freaked out.

Which has led me to think about acceptance. Acceptance of situations is thought of as a healthy step towards feeling positive about things and being grateful for the life you've been given. I have been told various things from well-meaning people about their opinions surrounding acceptance. Some people say I shouldn't accept that I am very unlikely to recover, and some say that too much acceptance can be a bad thing.

But how am I meant to move on with my life without understanding and accepting my state of health? Maybe I will get better, but realistically can I plan for the >5% possibility? I have to think practically, which isn't something I really like doing.

I don't feel the unbearable fatigue any more than makes me unable to move, but I think I have just gotten used to it as all the symptoms I have had in the past only when I have severely over-done things are now constant instead of rare and I have developed new symptoms. Is this acceptance? My body has acclimatised and now all these aches and pains and weaknesses and everything else are part of life. I feel so old at 19, or at least my body believes it is way beyond the teenage years.

I also am amazed to think that it has been almost 11 months since my relapse (that I haven't recovered from by the way!). And that overall I have had CFS/ME for 4 1/2 years. That's crazy.

Independence, humility and gratitude

I have been feeling very sorry for myself lately! Feeling rubbish all the time doesn't really help you to see straight. This week is reading week and so I am taking a break from independent living for a few days and have gone back home. I have still ended up making small meals and doing my washing but the strain of doing cleaning to other people's standards (mine is very low) and cooking main meals is relieved, along with the effort involved in going to lectures. Not entirely a holiday though, as I have a mound of work to get done!

I have been thinking about 3 things this last week: independence, humility and gratitude.

Independence
Coming home has meant that in a way I have lost some independence because my parents are helping me with things and I can pretend that university doesn't exist for most of the day if I wish. And in a way this is quite a nice feeling, but at the same time I do miss my independence, but I won't get all of it back when I go back to university. I can't walk for more than 10 minutes a day without a lot of pain, dizziness and nausea - and nowhere useful is within that walking distance, which means I either have to ask others to do things for me or ask others to help get me to the more distant places.
I have been getting to lectures by taxi which Student Finance have offered to reimburse me for due to my DSA. I calculated how much I have spent on taxis just this far and it came to £234!!
Disability can, in a number of cases, lead to people loosing at least some of their independence, and pride comes into it in that people do not like giving up their independence, being able to do things their way, and instead rely on others. Because really, how many people are truly reliable? If you muck something up and you end up suffering that's one thing but if you are relying on someone else to do it and they muck up, that's a whole different matter.

Humility
Personally, I don't think humans are naturally very good at this and humble people always amaze and inspire me. Jesus was a very humble person and He helps me to put things into perspective. Jesus was born to die for us, which meant that as soon as He knew what His calling was, His death was in sight. I think people generally think they have some great purpose, or at least they hope they do to make all the sufferings in life worth it, but what if your ultimate purpose was to die, and to be hated along the way? I think I would probably kick up a bit of a fuss and give up, but Jesus saw what was coming and yet still acted with great humility and grace. He didn't wallow in self pity (like I often do) and wonder why no-one was paying any attention to all the sacrifices He was making. God's approval was enough. That didn't make it an easy task, but as tasks go, it was pretty extraordinary.

Gratitude
I was reading the verse Phillipians 4:6-7 the other day:
'Do not be anxious about anything, but in everything, with prayer and petition, with thanksgiving, present your requests to God, and He will guard your hearts and minds in Lord Jesus.'
I have always liked that verse but never really noticed the thanksgiving part, but it is so important went it comes to not being anxious. I can say this from experience. It seems crazy when you are truly anxious to turn around and say thank you, but if you start small and work up, you do find things that you can be thankful for. Somehow, God uses our thanks to 'guard our hearts and minds' which can mean different things I suppose depending on the situation, but when you are anxious and your mind just won't stop creating new worries, the thanksgiving can guard your mind against these new worries.

The Symptoms and Nature of CFS/ME

I have mentioned before that I would do a post on the symptoms of CFS/ME and I think today is the day! But I will also talk about the nature of the condition as I think that it all becomes confusing, and people make wrong assumptions.


So firstly, there's the fatigue thing. What does that even mean?
The fatigue involved in CFS/ME is very different from normal tiredness (in the last 9 months since my crash, I have maybe felt tired in the normal way maybe 10 times?). Normal tiredness comes from being busy and if your day has been productive, it can feel quite nice at the end of the day to be tired and sleepy as you head to bed.
That is why the condition is called Chronic Fatigue Syndrome, rather than Chronic Tiredness Syndrome. The best description I have heard so far of what it feels like is that your muscles don't really work properly. You tell your legs to go up some stairs and they get stuck on the first one. It feels like the energy is simply not there, like when your car completely runs out of petrol. Other analogies include the feeling of walking through treacle.

What does this have to do with post-exertional malaise?
Post-exertional malaise (PEM) sounds fancy but all it means is that you feel HORRIBLE after any activity. That includes sitting upright in a chair, or cooking dinner. How a normal person may feel after a hefty work-out at the gym doesn't even come close, and I can say that from experience as I used to enjoy a good gym work-out.
The PEM worsens every other little symptom that is there in a CFS/ME sufferer.
PEM also causes a weird thing which has been likened to sunburn - very little effect at the time, but a major effect hours or maybe days after. So a sufferer could go for a long walk one day, and then be bedridden for the next 3 days. This looks rather odd to others as normally the ability to do something one day is indicative of the person's ability always, but with CFS/ME the opposite is the case.

Is there pain involved?
Luckily I have not suffered much with pain, but a lot of people with CFS/ME have crippling pain which, similar to the fatigue, is worsened by activity. I can only really speak from experience with this one as describing pain is tricky. Personally, I ache a lot, and when my muscles have been used too much (for me, that is) they hurt.

Dizziness leads to me being at least in a sitting position, if not lying down for most of the day.
If I close my eyes for a second, and then open them, everything spins for a couple of seconds before righting itself.
Standing or walking for any prolonged space of time (like more than 5 minutes) can lead to varying degrees of dizziness. Multitasking while standing or walking increases the severity of the dizziness and the speed at which it comes on. The number of times I've almost fallen over because the world has been toppling about...

Feeling nauseous doesn't help either.
Fairly self-explanatory I think. Not helped by the dizziness, mind.
I normally get this when I have really pushed it, you know, by maybe walking around the block or something.

Sore-throats appear to crop up.
I have heard of a number of sufferers, myself included, who seem to have some form of sore-throat at all times.

Concentration and memory problems.
Also known as brain fog. This appears to occur in conditions such as M.S. too, but with a different name. Imagine you on a bad day when you overslept and you're groggy. And maybe a bit hungover. That's brain fog more or less, but it happens all the time.

Not really helped by sleep problems.
Anything you can think of that could go wrong with sleep, goes wrong at some point: can't get to sleep, can't stay awake, keeping waking up, really vivid dreams, can't wake up in the morning. Mostly the problem is that it is unrefreshing, although the dreams have been getting weirder and weirder.
The tendency is to swing towards sleeping for 15 hours a day or so, to hardly sleeping at all. Not much inbetween.

And then just loads and loads of random stuff like:

• food and alcohol intolerances.
• sensitivity to sound, light and touch.
• difficulty judging distances.
• problems with body temperature regulation.
• difficulty focussing on objects.
• sensitivities to various medications.
• numbness and tingling.
• many more really quite random stuff.

The nature of CFS/ME.

• Not everyone gets all the symptoms, but all will have the fatigue problem, and high percentages of sufferers have been found to have all of the symptoms listed.
• The symptoms can be managed by careful rest-activity balancing. The worse the CFS/ME, the more the balance must sway towards rest - in severe CFS/ME you must rest virtually all the time.
• The rest needed for sufferers is total, as in lying in bed feeling relaxed. Sitting with friends watching tv counts as activity.
• Symptoms are not in a normal proportion to activity so you can't make predictions. They are also affected by mental activity and strong emotions so even being excited can wear a sufferer out very quickly.
• A sufferer will have good days and bad days which aren't always related to activity, although they can very roughly be correlated.
• It is present at all times, even when a sufferer appears to feel fine. Things can tip the balance towards more severe symptoms even once a person appears to be recovering. It's like the clutch pedal in a car - it can go down very fast, but has to come up slowly else you stall.
• It's not contagious.
• Stimulants like coffee have no effect other than maybe to make sufferers feel worse.
• It is totally different from having temporary insomnia, in that a few days of not doing much is nowhere near going to fix the issue.

I hope I have covered everything, if not at least enough for now. I don't mind answering any questions, however stupid they may sound, and if you've got this far, thanks for reading!!