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...
I went out to karaoke on Saturday night; maybe not the best plan given that I had been feeling a bit run down but it had been in the diary for a long time and a night out always helps to boost my mood. I have been paying for it the last few days as a result of tiredness (it was a late night and I'll admit I did have a bit of a dance!). It's also impossible to sleep past 7am with a preschooler! I was very careful with the alcohol though.
Anyway I decided to wear a dress I had picked up in a charity shop over in Stranraer when I had a weekend away in the summer. It's a Miss Selfridge dress and cost the grand total of £3.50 (a massive surprise as in Edinburgh charity shops are very pricey, for example you could pay £16 for a second hand dress from Next...)
My lovely friend won me some of these (don't be put off by the towie-esque website!) They are fantastic and really give your hair lots of volume.
This week some of the dreaded ME/CFS symptoms have been returning; twitching muscles, heavy feeling in my limbs, restless legs and the wrong words coming out or I've been getting words or letters mixed up when I talk. The latter is probably not so noticeable to others but it embarrasses and frustrates me although I'm at the stage now where I can laugh about it. What else can you do! I've also noticed that my thoughts are slipping into a more negative way of thinking, I've been a bit more irritable and my mood has dipped a bit. All warning signs for a relapse if I don't catch it quick enough.
Action Plan:
plenty of sleep
healthy diet - reduce sugar, caffeine and alcohol
meditation at least once a day
mindfulness during the day and gently challenging my thoughts
scaling back on the activities (never an easy one looking after an active four year old but good old mumsnet and netmums always have tips on activites to do indoors during Autumn).
I'm not always sure what definitely causes these blips - do any ME sufferers??!! But I'm reckoning walking too far last weekend, the change in season, family stress (I wont get into that...) and maybe pushing it slightly at yoga this weekend have been the contributing factors.
Always such an inconvenience when you think you are doing ok....
Last weekend we went up to Pitlochry and stayed in the very quaint Moulin hotel (3/4 mile from Pitlochry). It sells an amazing selection of real ales and whiskies and the food is delicious (proper Gastropub meals at very reasonable prices and portion sizes are good). They also have their own microbrewery across the road.
While we were there we revisited The Queens View, The Soldier's leap at Killiecrankie and spent Saturday night wandering round the spectacular Enchanted Forest at Faskally Woods. It's been running for a few years now and every October, they place lights and art installations round the forest and pipe eerie music out as you walk round. It does get busy, even though the entry times are staggered, and at some stages, we felt a little claustrophobic but I think its just due to everyone getting off the bus at the same time and walking in the same direction. As the time wore on, the crowds lessened and people were milling around different areas.
Its definitely worth checking out if you are in the area.
Unfortunately I didn't have a tripod with me so ended up getting better photos with my iphone! Although they don't really do it much justice!
After a weekend of a few drams, ales and lots of yummy calorific food like fish pie and blueberry cranachan, I decided yesterday to embark on a sugar free diet. So far it's not been too bad. I've not had any particular cravings but I'm sure that may change during the month! It makes sense to try and limit my sugar intake given the effect it has on my fatigue with the blood sugar levels. It does make it a bit easier though if I can substitute my chocolate and desserts for something else so I'm going to have a look and see what substitute recipes I can come up with.
It's been a problem for me since the age of 13 and still twenty years on, I'm cursed with blemish prone skin. It's linked to hormones, the fact both my parents suffered from acne and my sensitive combination skin which reacts to a lot of products. It also takes a lifetime to heal.
I have to say that now I'm a lot more comfortable in my skin generally in terms of looks, weight etc. and have learned to accept my acne (as unattractive as it is). However I still can't bear the thought of leaving the house make up free. To me that's my worst nightmare!
Over the years I've tried changes in my diet, antibiotics and various potions that chemists, GP's and alternative practitioners have given me (some of which have been pretty scary and taken layers of skin off) to no avail. The one thing that did work very well was Dianette contraceptive pill but I couldn't stay on that forever and when i came off it, my skin really flared up. It's very hard at this age trying to find products that tackle the blemishes while moisturising ageing skin...
I have found some products I really like however and do seem to make a bit of a difference although they are not a particularly preventive measure.
The Freederm range seems to be pretty effective at reducing redness and inflammation and I have just started using the overnight serum which is promising. Korres are a Greek company that I have dipped in and out of over the years. They are a little expensive though. Korres had a store in Edinburgh which unfortunately closed over the last few years so I buy online now and Liz Earle's products are a cut above but due to frugal times, I can't always afford to shop there. Always a good product to have on your birthday and Christmas list though!
The last few days I've been doing a lot of reading about auto-immune conditions and how ME/CFS could be categorised as one.
Basically one school of thought is that ME/CFS sufferers have an overactive immune system and that's the reason we feel so tired, because our bodies are on red alert, constantly thinking that there is an invader that needs to be killed off. To me it makes a lot of sense. This is an article from a few years ago and the issues surrounding improvement in symptoms during pregnancy (the immune system is suppressed during pregnancy) , the role of stress in developing ME, as well as triggering a relapse and how an overactive immune system can cause a myriad of symptoms like inflammation, IBS, intolerances and allergies. Exercise boosts the immune system so its no wonder that this can be bad for us...
I have a cold at the moment and so my ME is pretty bad. One funny symptom I get when I have the cold or a virus, is itchiness all over; a bit like a creepy crawly, restless feeling. Again probably a histamine response triggered by a wonky immune system. I wont get into too much jargon but the mast cells are connected to the histamine response and are thought to play quite a big role in ME/CFS as discussed here. Its also encouraging to see the results of the Rituximab trial and the further trials that are likely to take place.
In terms of what helps me, I find it very difficult to have time to rest (something that's extremely important with this illness) but with a preschooler and house to look after, part time job and friends to keep up with (that's vital for my sanity ha ha!) , its difficult to make 'me' time. What does help though is 'activity switching'. I ensure that I am only doing something for a certain period of time i.e.watching tv or going on the laptop, which I call a 'brain' activity. I will switch after a while and do something like washing the dishes or emptying the washing machine, which is a 'physical' activity. As I said before I'm lucky to only be mildly affected so not being able to rest regularly on a daily basis is not such a big loss to me now, although I'm fairly sure it would help! Most nights that I come home from work I'm no use for anything except my bed!
I'm determined that I will recover fully though. Next month it will be 11 years since I first became unwell and although its been a slog, I have made a massive improvement with my health. Back in November 2002 I was stuck in my bed for weeks on end struggling to walk through to the bathroom for the dizziness and couldn't focus on people outside the window due to the blurred vision and floaters in my eyes. The exhaustion was unbearable and I cried lots especially when the GP dismissed it as a virus and told me I needed to get back to work... The headaches, GI symptoms, palpitations and muscle twitches worried me enough at times that I wasn't sure I would make it through the night. Thinking back it's like some awful nightmare and was a massive strain on my very new relationship. But I got through it (and stayed with my boyfriend - now husband!). Reading the books on recovery from ME/CFS and the stories online were and still are a big inspiration.
This week Martine McCutcheon has 'revealed' that she has had a seven year battle with ME and depression but from the sounds of it she's recovered. While I'm pleased to hear that she is well again, unfortunately she hasn't told us HOW she recovered which is frustrating for the estimated 250,000 people suffering from ME/CFS in the UK. This sounds all too familiar... over the years I've read about celebs who have suffered from chronic fatigue and got well again but never shared their secret to recovery. This list however does mention some of the celebrities affected and what approaches they have used. I can't help but feel that the availability of money and time contribute significantly to most of their recoveries... One sufferer also mentioned this week in the news although not quite so famous (yet!) is Malcolm McKay, a writer from Stornoway who has won the top crime writer award in Scotland. His illness has prevented him from working or going to uni so it's a pretty amazing feat to have written a novel and sends hope to others.
To the ignorant or ill informed lay person (or professional for that matter) reading Martine's article I don't think it gives a very good insight into how severe and debilitating ME/CFS symptoms can be. I always find it frustrating that someone in her position could use her fame to spread awareness and understanding of an illnes, that still after all these years, is misunderstood. But it appears that she would prefer to promote herself and discuss her return to singing...
Next week I start my ME specific yoga class which I'm looking forward to and I have my follow up Consultant appointment, when I should get the results of my autoimmune tests and hopefully be referred to the ME/CFS rehab service. In the meantime, I came across another free ME/CFS self help website, which was promoted on Phoenix Rising. I've posted a link to it under the links section of the page. It seems to make a lot of sense and I feel I can incorporate some of the approaches related to nutrition, exercise and rest into my own recovery.
I've been buzzing around tonight but came across a nice little article with ways to relax....
So this was a casual outfit to go round to a friends for a movie night. I'd bought some new ankle boots from New Look that I was desperate to wear so I teamed them with a pinafore style dress that i got from Urban Outfitters a few years ago and since the autumnal nights are here, I put a denim shirt (Oasis) over it with a leopard print scarf. Think I hit a few trends - #darkflorals #ankleboots #leopardprint
Last weekend was our final camping trip due to Autumn setting in and the temperature gauge dropping. Although it was chilly, previous trips to Glencoe in March when there were icicles forming on the tent during the night have warned us of the dangers of going ill-prepared, so we took our thermal long johns and down sleeping bags and were very toasty! We met some friends and stayed in a campsite in Alyth in Perthshire (five roads caravan park);
The owner and facilities were great. Its a small campsite and set up mainly for statics and caravans but has space for a few tents. The only downside was the lack of a camping shelter, as we found out on Sunday morning when the heavens opened and there was nowhere to cook our bacon and egg!
If you are not into cooking al fresco then its worth visiting 'the traditional fish and chip shop in Alyth'. The best fish supper I've had in a long time!
We also took a day trip to 'Active Kids' in Stanley on the Saturday; a farm park with lots of trampolines, slides and a few farmyard animals. It was reasonably priced and the boy enjoyed it but I've been to other farm parks which have impressed me a bit more in terms of rides and the size of the park, although from memory, they have been more expensive...
So the camping equipment has been packed away for the year but I have to say i'm looking forward to Autumn. I do enjoy the change in seasons although this is always the time when my health dips. I'm never sure whether it's partly psychological as this is the time of year when I first became unwell (and had my bad relapse last year) so perhaps it holds a negative association for me. But I refuse to be apprehensive about it. This year I'm going to embrace the crisp cold mornings, look forward to the steaming mugs of hot chocolate and crunch through the fallen leaves in my wellies with my boys :)
Well I did something really silly. I went out and had a few drinks... I thought that I could be 'normal' for the one night, you know the way that other people are after they finish work on a Friday and as I had been feeling somewhat better with my ME, I took a chance. Oh did I pay for it. I was completely wiped out on Saturday and the last few days my head has felt like it's stuffed with cotton wool, the dizziness returned and my temperature gauge has been completely erratic. So I've taken a few steps back again but I'm hoping that a return to pacing, lots of sleep and healthy eating will help me get back on course. I hope...
It's tough to think back to a great deal of my twenties when all my friends and colleagues were off having exciting adventures and going on fabulous nights out that I would either not go to at all or tag along knowing full well that i couldn't keep up with the pace (although I would try and pretend that I could) and would feel absolutely horrendous for days if not weeks afterwards.
Although I have a lot to be grateful for (in the main my ME has been fairly mild) it still robs you of your life. There are lots of things I would have liked to have done, places I wanted to go and stuff that I missed out on by being so consumed by my every symptom and the consequences of certain behaviour.
However I believe that without getting unwell, I wouldn't have pursued the career path I have chosen and shifted my thinking to look at life in the way I do now which, despite my rant above, is actually pretty positive!
I know myself that to be as well as I possibly can, I should live within my limits but surely sometimes you have to break out of that box....
The last few days I've been feeling as though as I've been running on adrenaline. A lot of the general population suffer from this at bedtime but fellow ME sufferers will understand the 'tired but wired' feeling that we get during the day too. Work has also been extremely busy which has meant a few early starts to ensure I get everything finished. That's always the downside of working part time...
Earlier in the week I was struggling a bit to keep my little boy busy and it reminded me that I had started writing a list of useful tips at the beginning of the year that I had never got round to finishing. Here's some ideas for looking after little ones when you are unwell. I would be interested to hear feedback on what I've suggested.
Have a small supply of child
friendly ready meals for
days when it is too difficult to cook.
When
you are cooking, make more and freeze
the extras
Pasta
is
a good option, just
needs heating and you
can add frozen/tinned
veg.
If
you can, encourage children to eat fruit
whole so that it doesn't need lots of prep i.e.
cutting up apples or
try
and prep
fruit and veg at a time when you can manage and pop in the fridge for
later.
General;
Try
and have a good
routine - bedtime, meal times etc as
this can help with sleep patterns and behaviour.
If
it is easier, then do bath-time in the mornings or at a time when you
feel able to manage. (Bathtime is sometimes an easy way to play and
keep children occupied as you can sit next to the bath while they
splash around).
Ask friends who have
kids/ grandparents/ other relatives if they can take your children to
play
at their
house
for
a while
Have
a reward chart for helping i.e.
staying in bed, putting clothes in the washing basket, getting
dressed
etc
If
you have the finances, then some time at nursery may help you to
rest. Also ensure that they are signed up for a funded pre school
place so they can attend their local learning centre for a few hours
once they turn three.
Classes
that they can participate on their own like a gym class or swimming
can give you 45 minutes or so to sit and rest.
Playgroups
may also be helpful but there is usually a requirement that you
supervise for a session every few weeks so you need to bare that in
mind.
Try
and keep on top with the housework when you are feeling a bit better
i.e. washing etc. so that if you have a bad spell, there are still
clean clothes for everyone to wear!
Get
in touch with social services, they may be able to set up a carer or
offer some support with childcare. However this does sometimes
involve payment.
Play;
Sticker
books and
reading
can be
done
while laying on the sofa.
When
doing painting have a messy mat which you can roll out and roll away
and then there is little clearing up to do...also good for
things like play doh, where you can sit and watch and talk about it
without having to do too much
Have
a good stock of child friendly films and if need be, have a tv in
your room or take a laptop with headphones so that they can watch
while you rest
Don't
be afraid to have a few iphone/iPad
apps. If
you can make them educational then you will feel less guilty and you
can restrict
the time doing it.
Make
cakes but buy the kits which require little help from an adult.
Find
a good indoor soft play centre,
so that they can run off steam and you can watch or read or just sit
down. It
is sometimes better to have another child or parent and child with
you so they can occupy each other as otherwise you may find yourself
drawn into the softplay...
When they
are school age, there may be a
YMCA or good holiday club they
can attend for
a few hours a day.
Have
things like Lego and puzzles where you can lay on
the sofa while they sit on the floor and play and you can then talk
to them about what they are doing.
Have
different colour coded boxes with activities/ toys in them for days
when you have more energy than others i.e. green day could have more
interactive/ energetic activities in it than say a red day. Children
then begin to understand your limitations for that day.
If
you have a garden then let the children play outside with their toys
while you sit on a chair and keep an eye on them (on cold days wrap
up warm!)
Well I had my appointment with the ME consultant who was very understanding and confirmed that yes my symptoms have been caused by ME for the last ten years. He's doing some checks for auto-immune diseases and I have a follow up appointment in October when I may be referred to the ME clinic, which consists of emotional support (CBT) and help with encouraging my body to do a bit more (graded activity). These two approaches are pretty controversial but I'm willing to give it a bash considering that my health has been a bit better and I would really like to start incorporating some exercise into my week.
We had another camping trip at the weekend. This time over to the west coast, just north of Stranraer. Not a part of the country I'm familiar with but it was very pretty and good fun. Campfires, marshmallow toasting, gentle walking and lots of reading; very relaxing! I'm not sure why but I do tend to relapse with the dreaded sugary and unhealthy snacks when I'm away so back on the wagon again today!
I've been pretty good with mindfulness and meditation over the last week. I downloaded an app which you can get some more info on from: http://www.getsomeheadspace.com/ Basically its 10 minutes for 10 days. It's been very helpful. Also from today there is the new Deepak Chopra and Oprah 21 day meditation, this time focusing on relationships. I enjoyed the last one so am going to give this a bash. http://www.oprah.com/own/First-Look-Deepak-Chopras-21-Day-Meditation-Challenge-Video
Tomorrow I have an abdominal scan in relation to the haemachromatosis to check there is no organ damage. I'm sure it will be fine given that my iron levels are still low. The main worry is that I have no one to look after my little boy so I'm hoping he can occupy himself in the room for 30 minutes while the scan is done...
I have been doing pretty well on the healthy eating front. Last week, I made a few salads including smoked mackerel, apple and fennel with a yoghurt and lemon dressing which was very tasty. Yesterday I treated myself to a 'skinny' eggs benedict; muffin, a few asparagus spears, a poached egg with a drizzle of olive oil and some shavings of pecorino - yum!
At the moment the Edinburgh Festival is on so the city is extremely hectic for the next three weeks. Although at times it can be exhausting pushing through the crowds (especially when you are trying to get to work!) at the same time, it's great to get involved. This morning me and the boy are off to see Tiddler and other terrific tales. Apparently its sold out so I have high hopes for it!
So it turns out that although I have haemachromatosis, my iron count is fine at the moment so I can carry on eating red meat and basically enjoying life. It wont be until my later years that I may start to have problems but it will be closely monitored. Back to the drawing board.... My GP has now referred me to the 'ME specialist' so it will be interesting to hear what he has to say.
We have been away camping over the weekend to a lovely place in Fife called the Pillars of Hercules http://www.pillars.co.uk/ (an organic farm with a tasty cafe and a chilled out vibe).
We spent the day at St Andrews where my little boy ran wild on the beach and was even allowed to go out for a little while on a canoe - cue very excited 3 1/2 year old!
We also checked out the local ice cream shop which had a whole array of ice creams - spoilt for choice! We ended up choosing sky blue (marshamallow flavour) and butter pecan mmmmmm....
It's lovely to get away for a weekend, especially in the nice weather. It did feel like a proper rest.
For a few days my mood started to dip again. I think it was due to feeling so run down with fatigue and headaches caused by sinusitis and hayfever and these recurrent mouth ulcers I've been having for the last six months. What was annoying was that I've been very disciplined the last week; going to bed early, eating well, no alcohol and pacing better so it was rather frustrating. Then I decided yesterday that only me could get myself out of that negative head space and so I've been incorporating mindfulness into my day when I can. Leading on from the ten ways to make yourself happy in my last post, I've also been more considerate towards others; letting other people in front of me when I'm getting on the bus, letting cars out at junctions (which I tended to do anyway but sometimes was so distracted by my own feelings that I forgot). I have to say that it feels good and has helped to shift my thoughts into a more positive frame of mind. I realised the last few days, I was being quite self-pitying. I came across a post on another blog which really helped put things into perspective:
The author talks about coming to terms with living with me/cfs and how although the condition has no cure (yet!) the control lies with the individual i.e. if you're not looking after yourself then you are only going to feel worse. I believe it's really important to nurture both your physical and mental health as they are interconnected.
Funnily enough today has been a much better day....
So I'm now a city girl and so far I'm enjoying it. Maybe because I know it's time limited. It's great to be able to step outside and have lots of nice shops, delis and boutiques on my doorstep oh and it's a 20 minute commute by bus to work, which after my last hour and a bit commute is blissful! On the downside, it's expensive living here and I miss the garden, plus the shorter commute means I don't get as much reading time to myself. However the flat is smaller so less cleaning and tidying to do and I have a size-able kitchen which I is amazing after the boxy kitchen in the last house. There's also a lot of green areas around. The photo below was taken after a fifteen minute walk from our flat. You can see over the whole of Edinburgh.
Health wise, I knew I would be struggling a bit after the move and so I've been resting more which thankfully seems to have paid off. I have my initial haematology appointment next week so feel a little apprehensive but am keeping positive. I continue to do meditation although for shorter times and usually before bed, which isn't always the most restful time to do it but I still feel it's beneficial. I've also been more aware of my thoughts and actions and practising mindfulness, something I would like to explore further.
I came across an interesting website http://www.actionforhappiness.org/10-keys-to-happier-living which lists the ten ways that have been proven to make your life happier and more fulfilling and how you can incorporate these into your daily life. I'll let you know how it goes...
So the house move is underway. Two days to go and still quite a few boxes to pack. Understandably it's pretty stressful and so I've decided to lighten my mood by identifying 'the bare necessities' in my life. Not basic needs, more luxuries and in no particular order (apart from my boy of course)....
So I have a hospital appointment soon regarding my iron levels which is encouraging and in terms of fatigue, I'm pleased to say that my energy levels haven't been too bad.
I've been away in Mallorca on a family holiday which was lots of fun but busy, so I've definitely not been pacing as much as I should have been and although my diet of fish, salad and grilled veg was healthy, I'll admit to the odd glass of wine and quite a few desserts....
Although the meditation hasn't been as regular as I would have liked, I have been relaxing every day and am still tuned in to how my body is and responding by moving my activity levels up or down a gear.
The house selling situation is still quite stressful as the sale has not been concluded and we only have two and a half weeks to go - crikey! We have found a rental however and are in the process of organising removals etc. so everything is on track and the main issue for me is to try and keep it as stress free as I possibly can.
I have a journal by my bed side that's titled 'everything will be alright' and I'm confident it will be.
Eeek! I hadn't realised just how long it was since I had last written. A lot has been happening, as you may have guessed.
Firstly, we accepted an offer for the house four days after it went on the market. So we were both very surprised but pleased. Unfortunately issues with the missives mean it is taking a lot longer than anticipated to tie everything up and there is still a chance it could all fall through... I'm keeping hopeful though....
Secondly, my GP has advised me that the result of my genetic test for haemachromotosis or HH (iron overload to the lay person) have returned positive. He is adamant I don't have ME and believes that the build up of iron in my body may have been causing a lot of the symptoms over the last ten years. Very frustrating that it hasn't been picked up until now and also I'm keeping open minded as a lot of the symptoms that I believed to be ME don't seem to fit with HH. Anyhow the treatment is blood letting, so fairly straightforward given that I used to donate blood and I'm keeping optimistic that this may help to improve how I function.
Unsurprisingly the daily meditations have fallen to the wayside and I need to get back on track with that but in general I have been continuing to think positively. With regard to exercise, I have started to lift cans of beans and use these as weights. My husband laughs but 'better something than nothing'...
In terms of diet, I'm seriously going to have to think about reducing my red meat intake and alcohol - not that I was an excessive user of either of those foodstuffs but I wonder whether they had an impact on my health. Time will tell......
I've been doing little bits around the house for the past few months in anticipation of putting the house on the market however its only in the last few days that I've realised actually how much needs to be done to make the house look pristine for the photographs. So I've been dusting, sweeping, mopping and frantically cleaning the house while my husband sorted the gardens. As a result, I'm now feeling quite worn out and think I maybe coming down with a chest infection. There's a lot to be said for pacing and keeping stress levels low!
In saying that I've been managing to keep doing my daily meditations and hope that I can continue this as I'm finding it very beneficial. I've also been reading a lot about mindfulness and 'being' in the present moment which definitely sounds like it would be of value to me. I'll let you know how it goes...
Eeek it's been a while. In my defence though I've had a busy week. Other half is snowboarding in France so I've been the sole carer for my 'Little Chief' (as he's known). Its been a lovely week but we've encountered a few disagreements, which has resulted in him crying and saying that he doesn't love me anymore and demanding his Dad comfort him. Although he soon realises this isn't possible and it all blows over again. I think the fact you can rationalise with a three year old makes a whole world of difference than the tremendous tantrums that we came up against during his second year!
Despite the busy week, I've kept up with my meditations. Today's was very powerful. The theme today: 'being grateful for what you have' and being enthusiastic about what you have now in your life and confident about the future. I usually keep a gratitude diary but here are three things I am grateful for:
my wonderful son who brings me a lot of joy and makes me laugh (a lot)
the fact I am financially secure enough to be staying in a warm house today and have food to eat
a supportive family who have stuck with me through the hard times my illness has put upon us.
So it appears that I've picked up the boy's cold. As a result I have a stuffy nose and a raspy cough as well as a head that feels like it's been stuffed with cotton wool. It hasn't done much for my healthy eating plan. What's the old adage? 'Feed a cold, starve a fever'? Well that's pretty much the advice I have been following! I know I said I wouldn't get too hung up on my looks but I have joined an informal diet club at work. So Friday's weigh in will be amusing....
Interestingly, in today's meditation the centring thought was 'I choose foods that help me thrive'; a quote I should pin up on the fridge....
So I've been continuing to follow the 21 day meditation challenge and finding it very helpful in terms of being aware of how my body and mind connect. Yesterday was a guided meditation which was useful in that I found it easier to focus and not let my thoughts wander.
I've also came across this fashion website, which is great for recognising what body type you are and what styles and colours suit you. Although I'm mindful that striving for perfection, with regard to what I look like, isn't going to be helpful to me, I think that being able to build a capsule wardrobe with styles that suit me will make a difference to my confidence. It's well worth checking out.
Well here I am in the world of blogging. It's all a bit scary but I'm guessing it's going to be quite cathartic. I've decided to blog due to a recent relapse with the condition I've had for ten years (ME-CFS) which thankfully I appear to have made a good recovery from but.... like a fellow ME-CFS sufferer described it, ME-CFS is like an elephant hiding round the corner waiting to jump on you. I believe that this relapse was caused by stress and an increasing feeling of striving for perfection in quite a few areas of my life. So to avoid any further relapses I need to take some precautions. Mainly these are; to ensure that I am eating healthily, avoiding any stressful situations (that can be avoided!) and to do daily meditation as well as pacing my activities.
I've recently embarked on the 21 day meditation programme run by Oprah and Deepak Chopra which I've been finding benefit from (I'm on day three at the moment). In terms of eating healthily I have a terrible sweet tooth so I've slipped up a few times with chocolate bars. I really need to tackle this! Luckily things seem to be going quite smoothly, no major stress so far!
Finally I need to be accepting myself for who I am, how I look and what I have in my life.
.JPG)
