A blog about trying to live a healthy lifestyle in both body and mind, while living with ME/CFS, as well as discussions about my family life and hobbies.
I don't really like making new year's resolutions but I do have a guilty secret and that's compiling a list of things to do before I'm 40. I was thinking that I have a fair bit to go before that happens but then the other day I realised that I actually turn 35 in the summer. Eeek! I find that extremely hard to get my head around. Turning 30 was actually ok for me; I was pregnant, married, a house-owner, my health was stable and I had a job. So for me I felt I had achieved a lot of things I had wanted to do. It's entering the territory of 'middle aged' that scares me. It's stereotyping I know but the image I have in my head of someone middle aged is dowdy, dull and sensible. Far from what I believe I am and most of my friends the same age are (and in fairness most people who could be termed middle aged!). And I don't like labels and refuse to be boxed in by them, probably as much as I like to push against the label of ME/CFS! So I'm going to carry on as if I'm still 27 (this is the age in my head that I am stuck at). And although I haven't made resolutions for 2014, my main goal is to continue to be healthy, listen to my body and keep going with my meditation and yoga, as well as the practical - finding a new house!
I have a board on Pinterest that I'm using to collect all my ideas of what I would like to achieve before 40 (please check it out and follow me if you are on there):
Write a short story
Learn Spanish fluently - I did some night classes a few years ago but didn't keep it up
Learn Guitar - I'm fairly musical anyway and did some chords in my teenage years but would like to brush up
Go travelling - South America, The States - too many to name individually!
Learn to dance to Northern Soul
Have a vintage style makeover and photo shoot
Go skinny dipping - I've done wild swimming while camping but never naked!
I'm sure I will add to that list but for now its all about not putting too much pressure on myself, keeping my health stable and trying to be the best mum I can be. Next year my little boy starts school which is also going to be very traumatic for me!
Do you have goals, dreams, aspirations? Even with a chronic illness that fluctuates I still feel I need to keep positive and aim high!
I'm not going to go into too much detail about coping with Christmas as there are already some great blogs and articles already out there; the lovely Hayley's guide to surviving Christmas and this from Cort Johnson at Health Rising, which discusses expectations that we have of ourselves and that others have of us. There is also an article on the Action for ME website which is worth a read. Finally A Thrifty Mrs and Miss Thrifty's blogs have given me quite a few tips on cutting costs this year.
I have to admit that despite pacing the Christmas shopping and having a husband who is on a par with Jamie Oliver most days, I still feel anxious about the big day. I think sites like Pinterest (jeez I have such a love/hate relationship with it) make you feel like everyone else is having a wonderful 'Martha Stewart' time of homemade christmas cards, freshly baked mince pies and beautifully presented, well behaved children. When in reality, my tree looks pretty wonky from my little boy knocking it over and half of my nice decorations are chipped or broken.(Why is it never the crappy ikeas ones that take a knock? It's always the nice Gisela Graham or John Lewis baubles grrr... ) Also due to my perfectionist personality, I have taken over the responsibility of buying most of my family and my other half's family gifts. Just to put you in the picture, its likely they would have nothing to open on Christmas day if it was left to him.... This comparison definitely applies to me!
Anyway we've decided to have Christmas at ours this year. My parents are coming and have offered to make a Clootie Dumpling; a Scottish steamed pudding, which is a lot nicer than Christmas pudding in my books. Luckily my folks are pretty low maintenance and will be quite happy to just chill out and accept whatever (I think...). My other half is a keen cook so will rustle up a very edible turkey dinner (I hope...) and I can be hostess/look pretty in my Christmas outfit and r̶e̶l̶a̶x̶ be forced to play Star Wars with my little boy.
This year will be a much happier time for me though. Last year, I had a horrendous relapse and could barely even stand long enough to decorate the tree or sit and eat a meal without retreating back to bed, so I'm extremely grateful that my health has improved and my symptoms are back to being mild and more manageable.
I have my first ME/CFS clinic appointment in January which I'm hoping will help to equip me with some more skills for managing my illness and hopefully improving my strength a bit more.
Let's hope that 2014 brings continued better health :)
I had been doing pretty well on the sugar and caffeine front until the last few days...
Image: ondietandhealth.com
Every month, there is a week that causes me so much emotional and physical pain. Yes it's hormones! For me, there is a definite link between ME/CFS and hormones.
Prior to getting ill, I did suffer from PMS and also believe I was generally mildly dysthymic (although I could control this most of the time with CBT) but since becoming unwell it has increased tenfold. I get really irritable, negative in my outlook, feel anxious, get acne prone skin, oily hair, and am bloated, fatigued and notice an increase in my ME symptoms. Although I'm lucky enough not to experience pain generally with my ME, my muscles become very tender. My little boy loves rough play and so when he jumps on me or even grabs me, without much force, it can be excruciating! I also had Shiatsu on Saturday for the first time and wow that hurt! The bloating also causes a bit of pain.
The anxiety I experience is tough to deal with but I feel if I can recognise what the cause is and distract myself, then I can control it (rather than it controlling me). I follow this blog which is great for giving tips on how to handle anxiety in various situations.
During this time of the month, I try not to take too much on (which often means avoiding social situations or big things at work), get plenty of sleep, drink lots of water (which helps with the bloating), try and eat as healthily as I can (although i crave sugar like mad!) and use mindfulness and CBT to challenge any negative thoughts. It's a time I really dread every month and I envy those who seem to breeze through those days.
Do you find your ME/CFS symptoms change at certain times of the month? What have you found that helps PMS?
At the weekend I hosted an afternoon tea party which seemed pretty successful. I hadn't set up any music but had the radio on and just by chance 6music played some jazz and chilled out tunes which were quite fitting with the ambience.
Just prior to my visitors arriving I'd been listening to an interview with Kim Gordon from Sonic Youth (one of my big girl crushes!) Music is such a big part of my life and I haven't really shared what I'm in to. Although to be honest, I don't really know where to start!
Even during the bad times with my illness, I've always listened to music, I know I'm lucky as I'm aware some people with ME are very sensitive to sound. I've even dragged myself along exhausted to gigs and festivals as I've wanted to see the particular band/singer so much!
My tastes vary; as a teenager I was into a lot of dance music and indie but listened to a lot of sixties, jazz and classical (I played viola and violin and still do sometimes!), then an old boyfriend was into rap and hip-hop which I started listening to in my late teens/ early twenties. But my main influence with music was my husband. He introduced me to a lot of different bands and genres and I would say he has very similar tastes to myself. When we first got together he made me up a few mix-tapes for the car which I still have (and treasure even though I've nothing to play them on!)
I love to listen to my old dance tunes and reminisce about the past fondly. For me music is so powerful and can really shift my mood both positively and negatively. I do get times when I can't tolerate it though. My husband likes to listen to some pretty avant-garde stuff some days which I can't deal with.
At the moment I'm listening to a lot of funk and soul and rockabilly. Other bands/singers/djs that are special to me include Beck, Moby, Fatboy Slim, Beastie Boys, Jon Spencer Blues Explosion, Jurassic 5, Doves, Orbital, Parliament, Funakdelic, King Creosote, Daft Punk, Qotsa, The Black Keys, The Beta Band and a lot of newer Indie bands. However my all time favourite band are Belle and Sebastian. And by concindence it wasn't until I started reading Just a Modern Rock Story that I realised the lead singer Stuart Murdoch had been very unwell with ME while at university and had to take a good few years out. It was during this time that he wrote a lot of his songs. This interview talks a little about his experience of CFS. It appears that he is well nowadays or at least in control of his illness. I've posted you one of my favourites :) Does music play a part in your life? What tunes help you cope on your dark days?
In the last few days, I've seen a few posts both on blogs and on facebook from people who have stated that they consider themselves to have recovered using a particular approach, which has been individual to them and some have felt unable to discuss the reasons behind their recovery. Here's another update on Martine McCutcheon who has shared some of the secrets behind her recovery. I don't fully understand why people would want to keep it a secret and not help others... Anyway I've been thinking about what recovery is and how it seems to mean different things to different people.
For me eleven years on, I don't consider myself to be 'recovered'. To me being 'recovered' and 'well' is how I felt ten years and eleven months ago. Although I manage to work part time and look after a house (it doesn't resemble the glossy magazine pictures I aspire too though!) as well as looking after my boy and managing to do activities, I still suffer symptoms albeit mild. I'm aware that some schools of thought are that recovery doesn't always mean a return to pre-illness health especially if that lifestyle contributed to you becoming unwell but I would still like to be able to think that recovery could mean that I could still have the option of running a marathon if I wanted to?ha ha!
The question is what can help with recovery? I've tried a few things over the years. Some more helpful than others and I plan to do another post about those later. Should I have done/be doing more to help myself get well?? A (short) graduated return to full time shift work a few months after getting sick was never going to help my recovery... but in my defence I was beginning my longed for nursing career and had financial commitments. I was also in denial for a long time. I carried on trying to live the life I had been previously until somewhere along the line I began to accept what was wrong and alter my lifestyle and thought patterns.
Despite this I don't believe that changing your thoughts and taking an exclusively psychological approach to this illness will work (certainly not for me). When I can, relaxation and yoga definitely do make a difference to my fatigue levels and outlook but they are far from being a cure. Examples like the 'lightening process', 'mickel therapy' and 'reverse therapy' do seem to have worked for some sufferers but in addition to the lack of an evidence base for them, the costs involved are pretty significant. One approach I have been attracted to however is that taken by The Optimum Health Clinic. I have watched the DVD and follow them on facebook and I do believe that a holistic approach could offer some benefit. However until I win the lottery I will have to just make do with what the NHS is offering, which is graded exercise and cognitive behavioural therapy.
I could certainly do with letting go of a lot of the guilt and pressure I put on myself on a daily basis. I have to believe that it's not my fault and I am doing my best given the circumstances. Who knows, maybe it will be me telling you my recovery story some day....
So with winter coming, I'm back to knitting and hoping to do a few mini knits for xmas presents. I really love these mug hugs. Probably completely impractical but I think they are quite sweet and keep your cuppa warm, always a bonus when you have kids and are constantly interrupted, returning ten minutes later to a cup of cold tea.. Its a cable stitch which I enjoy doing, I like a bit of a challenge! I had a stressful moment last week though when I found that my little boy had pulled the stitches off the needles....luckily I managed to salvage it - phew! I'm never very good with dropped stitches or mistakes in patterns so it was close to being a disaster! I'm feeling quite pleased with myself for rectifying it. This is what I'm attempting to make and underneath the progress so far.
Given that the temperature has dropped, I've packed away all my summer clothes but there are a few other things that need to be organised for winter. I follow a very good thrifty blog that gives some tips for preparing for winter; A Thrifty Mrs Winter Checklist It gives a lot of practical advice for round the home. However ME/CFS sufferers need to ensure that they pace properly and I tend to start thinking of xmas planning round about now so I don't get overwhelmed in December. A few people have recommended this website; Organised Christmas Countdown I'm going to check it out. Anyway I hope you are keeping warm and I would love to hear about any projects that you have on the go or tips for xmas/ winter planning??
I had actually created a page for films because I love the cinema and am partial to an arthouse flick but I went to see this with my little boy today and couldn't resist telling you about it. I bought the first film on DVD in the summer from a very quirky secondhand shop in St Andrews and it's been a favourite on a rainy day.
I suppose I was quite apprehensive about a follow up as I wondered where they could go after the first film; scientist builds a machine that makes food, it then goes out of control , he eventually manages to switch it off (or so he thinks) and proceeds to save the world from being consumed by rather large roast chickens and hamburgers. But the sequel was surprisingly quite touching, humorous and enjoyable. Since the first film, it's obvious how the world of computer graphics has progressed. The colours were very vivid and the film was fast paced and action packed. We saw it in 2D as opposed to 3D. Although I think it would be a brilliant experience in 3D, I find my eyes can't follow the screen that well so I miss a lot of what's happening and my boy is only four so would probably find it a bit overwhelming.
The film describes an island that is now inhabited by over-sized items of food that have mutated into animals (as the machine used to make the food had not been switched off as the inventor had thought). There is a new character; Charles Z (the inventor Flint's childhood hero) who wants Flint to battle through the menacing atmosphere of the changed environment to locate the machine and turn it off for good. But has he got an alterior motive??
If I'm honest I'm always hesitant to go to the cinema to see children's films, as I wonder if it will also offer the parents an enjoyable experience. With this film I would have to say yes, it does. The storyline works, the animation is amazing and the jokes made me chuckle. And I could hear a good few other parents chuckling too...
