Symptoms Update. How I'm affected.

One of the things that sucks about ME is it's massive variety and spontaneity of symptoms. They come and go, ranging from everything from a common cold to a fever. It makes it hard to know what the line is between actual ill virus symptoms and symptoms from an ME crash.

When I was was really badly affected by my ME around February through to April this year my symptoms included the inability to control my body temperature, uncontrollable shaking, vision problems and heart palpitations as well as the usual fatigue. Probably the worst symptom around this time was my muscle problems; on many days I found it a struggle to walk any distance at all, I couldn't get up the stairs without help and I couldn't get in to school.

Luckily while most of those symptoms have subsided, I've picked up quite a few more and I don't think the range of symptoms will ever stop surprising me. At the moment, problems I have to deal with (not always on a day to day basis THANK GOD, but at least a third of the time) include:

• Pain (not always muscle specific) just general dull pains down my arms and the back of my legs.
• Swollen glands, this has been going since I had glandular fever in year 11, though now sometimes I wake up looking like the Elephant Man.
• Caffeine and alcohol intolerance - I may have had this for a while, but hadn't noticed. I am now  a real real lightweight and any caffeine gives me the shakes. 
• Eczema- I get it on my face, arms and back when I'm run down. I never used to have this and it's horrible and itchy. Hydrocortisone cream doesn't seem to be doing much, one patch will go and another will pop up somewhere else. 
• Weak joints - I'm hyper mobile, always have been bit over the past few months I've noticed how weak my joints are getting, I feel like my limbs partially dislocate a lot of the time and I'm left with wobbly and painful joints, especially my hips and knees. 
• Stress pain. I find that whenever get stressed, instantly I get pain down my arms. It's horrible, but I'm learning to  control my emotions in order to control my pain.
• Anaemia. I go through phases of being anaemic as my body isn't very good at absorbing the nutrients it needs. I take Iron tablets daily and at my worst I take up them up to 3 times a day. I'll do a post about a good diet for battling Anaemia at a later date.
• Disturbed sleep. My sleep for about 6 months now hasn't been great, but it's got to the point now where I am getting frequent nightmares and feel as if I'm awake at night for hours. The doctor's tried me on medication which I will talk about later, but it just makes me feel like a zombie. 
• Weak hair and nails- my hair isn't that bad at the moment, but my nails will not get any stronger, they're all flaky and soft and I need to find a treatment to help them. 

That's all I can think of at the moment apart from my general fatigue, which I still have most days.  I could sleep for hours during the day and it takes a lot to get me motivated, I just hope that each next week brings more ups than downs. 

Minor Achievements in Training

I had a pretty bad scare last Wednesday, I knew I'd been getting worse for a few days and really shouldn't have pushed myself with that run on the Tuesdays. It's funny with ME how you can feel great one day and think that you can continue to push yourself and then suddenly everything catches up with you.

On the Wednesday I was exhausted, I'd stupidly put my self down for a split shift at work from 7:15-9:15 and then 12:45-5:15 on the same day that I was meant to be training in the evening. I was tired enough in the morning and hadn't slept very well the night before and getting to and from work between shifts made everything so much worse. I felt shaky in the evening and felt so ill after training. My legs went all stiff and achy almost straight away and my time swims were no where near my normal times. It made me realise I really need to take my training slowly and just work on one thing at a time.

The upside of all this is that I've been working on the light weights and am starting to get some tone back in my arms. I really need the strength, it's horrible being too weak to carry things. I've also been doing sit ups and attempting the plank again (I used to be so good at core exercises) and have CYCLED TO WORK this week and done a lot of walking. Only little things but I can feel my self really starting to come along. I know I just have to keep going, bit by bit.

Slow and steady wins the race.

Beginning of Winter Training.

I will get fit again. Not like uber fit, but well enough to be on Warwick University's Triathlon Team and well enough to look good while doing it. I haven't really lost my figure that badly since the whole ME fiasco, still nearly the same dress size, I've just lost all my muscle tone. All of it. To the point where I can't help carry tables and chairs at work anymore. It's just a bit like my body has dropped, my arms and calves have just dissolved and lost their shape.

I used to swim a couple of times a week, including my weekly training session  with my club where I would swim about 60 odd lengths after doing running or cycling training. Now I struggle with 16 lengths. I used to do 16 lengths in under 7:20 minutes and now it takes me about 15 minutes as I have to stop for a break after a few lengths.

I need to get my swim times down to at least 7:30 by Easter in order to be able to properly compete in Triathlon Events next season. I don't want to even talk about how much my cycling and running fitness has decreased as it just depresses me. I used to be one of those people that turned to exercise when I was angry or upset and now when I'm angry or upset it sparks up my symptoms and I can't do anything because I get unbelievably sore. I need to start building up my strength again and with that my cardio and we'll see how it goes.

We have some free weights at home, just really light ones, 2 and 3kg weights which I'm trying to start using, though I can't even do much with the 3kg weights. I'll blog about the exercises I do in the coming weeks. I'm also starting to go to Aquarobics every Monday with my Mum and it really isn't as easy as it sounds, although I had to miss it this week because I'm feeling really rough.

These photos were taken late last week when I had inspiration for this post and this blog, which I've been useless at posting regularly on. I had a really good morning that day and went on a run round a small field opposite our house as I was feeling restless. It was my first run in months and although it really wasn't that far (probably just 1k) it spurred me on to believing that I really can get all my muscles working properly again... when my muscles come back.

That's my arms tense, not even kidding. And I know the date on the camera is wrong, I didn't know how to change or get rid of it.

What is ME?

I know from experience that not many people understand what ME is, how people get it, or how it can effect people's lives. Lot's of people, through no fault of their own, just think it makes me tired all the time. Some people I know don't even think it's a proper illness.

Part of this blog's aim is to increase awareness and understanding about ME/CFS as well as sharing my personal story, so I'm going to write, in my terms and using the NHS terms that I am still figuring out how to understand, what ME is.

Myalgic Encephalomyelitis (M.E.) is an illness most commonly known as Chronic Fatigue Syndrome. It's a long term fluctuating illness that can cause many symptoms the most common being persistent fatigue or pain.

Other symptoms include:

• Feeling generally unwell (flu like symptoms) 
• Sore throat
• Substantial impairment in concentration and/or short term memory
• Tender lymph nodes
• Muscle Pain
• Multi-join pain without swelling or stiffness 
• Headaches
• Disturbed Sleep
• Post-exertional malaise lasting more than a day (feeling ill after a busy day or exercise)

with less common symptoms being:

• Night Sweats
• Nausea 
• Tingling sensations
• Morning Stiffness
• Irregular Heartbeat
• Psychological problems, such as depression, panic attacks.
• Alcohol intolerance

How do people get ME?

In a lot of cases the trigger is linked to a viral infection , but other things can include an operation or accident, a stressful event or an unknown cause. One of the reasons it's so hard to diagnose is because Doctor's have to investigate what triggered the illness.