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Tuesday, 3 June 2014

M.E and pregnancy

I have a little bit of news ....  I'm expecting a baby!

I've been undecided about sharing my news for a few reasons but one of them has been worry about people's reactions.  This will be my third experience of M.E and pregnancy. Even though this pregnancy wasn't necessarily planned,  we are thrilled and I worried people would think it was foolish.  Luckily the majority of people have expressed excitement and congratulations.  A few have shown genuine concern without judgement,  but there have been a couple (one being a midwife) who have said "you have M.E and you are pregnant??" When I tried to justify myself by saying it wasn't planned she responded with "good!“

The reason why I have chosen to share this news on here is because there may be someone else in the same position or trying to make the difficult decision of whether to have children or not, like I was before my first child. Hopefully,  sharing this journey will be of help.

I'm at the end of my first trimester now,  we had our first scan last week.  It was a magical experience,  seeing the baby so clear on the screen.  Despite the awful few weeks leading up to the scan,  seeing an actual baby in there made it all seem worthwhile.
The first trimester has been awful. I can't sugar coat it,  but I did try to think positively about it! I am fortunate that I have a very good support network,  and a very understanding,  hard working husband.  My kids have been wonderful too.  I suppose that's one benefit of being ill,  nobody expects me to do anything! It was only me that things changed for,  I felt so much sicker and so much more exhausted and tired than before.  It's all encompassing and I couldn't think or concentrate on anything else.  I found little respite from it and all the little things I did before I could no longer do.  I slept as much as I could.

I write like things have changed.  Things have improved slightly, the sickness is waning, but the exhaustion is still there and makes life harder than it was before.  With my first two I felt an improvement after about 16-17 weeks, until then it's a matter of surviving till it passes.  Sleeping as much as I can,  reducing all types of activity,  and eating anything that I can stomach that doesn't make me sick!

If I have any tips to offer to others at this stage of  M.E and pregnancy it would be to take information of ME/CFS to your health care providers.  None of the tests they do bring up any problems with me,  so the midwives think I'm a perfect candidate with nothing to worry about.  I've seen one midwife in all three pregnancies that has shown any inclination that ME is something to be considered.  It was a relief to see her and I hope it's not the last time I see her either.  From my experience,  I may be clear in the tests they're most concerned with,  but pregnancy and especially labour and birth take their toll on my body more than normal.  In my second birth I found that nobody listened to me when I said my body wasn't coping with the contractions.  We had to be really forceful and demanding.  If there was greater knowledge of ME/CFS,  then more understanding and better care would have been shown.
And finally,  if you haven't already got one yet get a VERY good support network around you.  You'll need it throughout pregnancy and especially after.

Wednesday, 26 March 2014

Finding Hope

Finding hope

I saw sunshine tonight, it was 5pm and there was sunshine outside. It was a surprise for two reasons: Sunshine has not been seen very often in the North West of England for some time now; and it means the nights are getting lighter!

The beginning of 2014 has been very hard on my health and each day is a journey up a mountain carrying an elephant on my back. I’ve been keeping my head down and trudging on up that mountain, occasionally looking up to admire my surroundings, like the sunshine at 5pm today.

It made me think of the hope that summer brings and it reminded me not to give up hope. Just because things have been the same for so long, does not mean they will always be. The day follows night, summer follows winter, the weekend follows the week (or vice versa). There is always hope. The dips in our lives mean we will be able to see and appreciate the peaks more fully.

Alexandre Dumas explained it well

“He who has felt the deepest grief is best able to experience supreme happiness. We must have felt what it is to die, Morrel, that we may appreciate the enjoyments of life.
” Live, then, and be happy, beloved children of my heart, and never forget, that until the day God will deign to reveal the future to man, all human wisdom is contained in these two words, ‘Wait and Hope.’”

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Tuesday, 31 December 2013

Loving oneself for 2014

The new year is almost upon us and for me this time is always significant.  The words of a hymn we sang recently at church are similar to the feelings I have of the passing of the old year “Ring out the old; ring in the new. Ring happy bells across the snow.  The year is going,  let him go.  Ring out the false,  ring in the true. The year is going,  let him go.”
We should always be trying to be the best we can be,  but there’s something about a new year that really does feel like a fresh start. We literally say goodbye to the old year,  never to be seen again and we are given more time.  Our circumstances stay the same but inwardly we can make a change.
Last year my focus was to accept what came my way and try my best to love it. It was the best decision I made.  Although hard to do at times I felt much happier and harboured no bitterness.
For 2014 I want to put 100% into improving my health. The wheels have been in motion for a while,  but my lackadaisical attitude towards it has meant that I’ve experienced little benefits.  It’s time to start the full throttle. I want to tackle my health from all angles as I believe good health is achieved holistically.  Here’s what I’ll be doing this year,  in hopes that my health will go from strength to strength:
The Perrin Technique – every two to three weeks I see a wonderful practitioner who’s therapeutic massage drains my lymph nodes of the toxins that have built up.  She often does extra work to realign my posture and she is very knowledgeable on the right nutrition. It is the treatment at home that I will improve on.
Dairy,  wheat and sugar free diet – for the past 6 years since I have had ME I have tried both normal and free from diets and I have felt much better when restricting wheat, dairy and sugar.
Emotional Freedom Technique – I started this in October.  It’s a process of tapping acupressure points and speaking affirmations.  I have done this at least once every day since starting as I’ve found it really works to help me gain control of anxiety,  ease stress and work through any emotional problems.
Restricting social media – I have a love/hate relationship with Facebook. It has allowed me to not feel so isolated despite spending SO much time at home,  unable to socialise.  Yet it isn’t real life,  it’s not genuine concern and interest into the lives of friends.  It is the highlights (or lowlights for some) that they want you to see and you see a lot more that you don’t need or want to.  It feels more like boasting and stalking than sharing experiences with friends.

2014 is for loving oneself as Charlie Chaplin says “As I began to love myself I freed myself of anything that is no good for my health – food, people, things, situations, and everything that drew me down and away from myself.  At first I called this attitude a healthy egoism.  Today I know it is “LOVE OF ONESELF”. The new year is the time for doing,  or stopping,  anything that will help my body be at the best health it can be.

What are your goals/resolutions?

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Wednesday, 9 October 2013

Help! Need it - hate it!

Over the years some things have become easier.  I’ve learned to live within my boundaries (most days),  I’m used to the way I feel and have learned to cope with it,  and I’ve adjusted to life in the ‘slower than slow’  lane.
One thing that never gets easier no matter how hard I try,  is asking for help.  Oh how I hate it. It comes down to two reasons –  I hate imposing on people and I hate feeling useless and not able to give help back.  My husband despairs with me when he sees me struggling to do something. He can’t grasp why I haven’t asked for his help when he’s able and willing.  I just can’t bear to ask him.  I see a busy man working full time,  studying,  caring for me and our boys and I don’t want to add to that.
Asking other people for help is so much harder. I go through each persons name in my head,  then rule each one out thinking of all the demands on their time already and how I can’t possibly ask them. The thing is,  a lot of the time I ask people for help they jump at the chance.  They have known I struggle and yet not known how to help.  My asking them gives them an opportunity.
If people offer help without me asking it feels like the hardest thing in the world to accept.  I naturally want to say ‘no no,  I’m ok thanks’  and most often I do,  I then think of how hard it’s going to be to do it myself. It’s my pride that stops me. I want to be fit,  able and self sufficient.  I want to be the one offering help,  not receiving it.
Asking for and accepting help are big struggles for me,  but I believe learning how to do these things are important life lessons.  Before I became ill I valued confidence and self sufficiency.  I still do place high value on these traits,  but I see that needing help and humbling myself to accept it strengthens my relationships with the people who help me.  I see the sacrifices they willingly make for me and feel of their love and kindness.  My own self worth increases as I see people willing to help me.  I read this quote from Carlos H. Amado encouraging people to help one another and I think the benefits he talks of work for both the helper and the ‘helpee’. He said “Kindness,  love,  patience,  understanding and unity will increase as we serve,  while intolerance,  jealousy,  envy,  greed and selfishness will decrease or disappear.  The more we give of ourselves,  the more our capacity to serve,  understand,  and love will grow.”
So it’s going to be worth my while to work hard at being comfortable receiving help.  Who knows,  maybe one day I’ll be the one in the giving end once more… Only this time I’ll have much more empathy!

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Wednesday, 18 September 2013

Better food, better health

The summer holidays are over and routine begins.  I am definitely a creature of habit (thanks to pacing)  so the return of routine is like welcoming back an old friend . I will miss having my husband at home all the time though,  now he’s back at work his absence is going to take some getting used to.
One reason I’m looking forward to routine is so I can get back to healthier eating habits.  The summer brought lots of fun,  but lack of preparation and a huge decline in energy meant that lots of our meals were take outs.  I also went wild and ate nearly everything I had missed whilst I had been dairy and wheat free for the last two years.
Needless to say  my mind and body are suffering the consequences.  At the same time that I was strictly wheat and dairy free I experienced a relapse.  People would ask me if I’d noticed any difference on the diet,  but there was so much going on that had a negative effect on my health that I couldn’t tell.  Now that things have calmed down it has been easy to see the positive impact going wheat and dairy free had on my health. Since reintroducing wheat and dairy I have noticed  I have become more lethargic,  the pain has increased and I am unable to tolerate as much activity before my limbs refuse to work.  I wake up in the morning like I have been trampled by a herd of wilderbeasts.  My brain becomes even more foggy,  I forget more, become impatient quicker,  struggle to understand or listen when people are speaking. Writing or talking become even harder too.
The end of the summer is a good time  to get back into a routine and introduce healthier habits.  It is time to concentrate on creating the health  habits that will strengthen my body for the looming winter. My aim is not only to cut out dairy and wheat again,  but to eat less processed foods and introducejuicing. The hardest task will be to cut out processed food. It’s so prominent in our diets, and yet who knows what it contains. Jamie Oliver , the celebrity chef, works hard to encourage families to be educated in food and start to cook from scratch. HisFood Revolution website is a useful tool if you’re wanting to make the change to real food. I love the infographics for spurring me on and motivating me. 
These changes seem a bit overwhelming all at once,  but making one change at a time I will get there!

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Wednesday, 3 April 2013

The importance of Being

That best portion of a man’s life,  his little,  nameless,  unremembered acts of kindness and love.  William Wordsworth. 

As a family we’re adjusting to my relapse quite well. I guess it’s easier to adjust to somewhere you’ve been before. It wasn’t so easy the first time around. My two little boys have been a great help.  They’re too young to know that mummy is poorly and that helps me to keep my mind off feeling poorly.
It’s not easy being a mum of two very young kids whilst being this bad with ME / chronic fatigue syndrome. But they are certainly worth it. There is nothing more healing than a cuddle from two chubby arms and a kiss from a dribbly open mouth. Nothing brightens the soul more than hearing ‘wuv you too mummy’.  

Being married with kids feels a far cry from when I was bedbound, unable to sit up and told there was no cure. I wondered if that truly was it for me. I was in my mid twenties, still living at home and although I had a boyfriend, when he proposed I couldn’t help but wonder ‘what could I offer?’ My now husband and family helped me see that it wasn’t what I did that mattered, but who I was.
Then when we took the leap of faith to start our family I worried how I could care for my kids when I needed so much help myself. With a good support network (husband and parents), I see once again that it’s not about all I do for my children but how much love, patience and happiness I show them. A childhood friend came round last month and as we talked she said she found it remarkable the closeness of the relationship I have with my children that she was able to see as she visited us. It was a lovely compliment to hear and one I remember if I ever start to feel guilty that I’m not the kind of mum I see on pinterest!

I realise more and more the longer I have ME / chronic fatigue syndrome that I am much more than what I am able to do. My self worth comes from who I am as a person rather than what I accomplish. This kind of self worth can’t be shaken as easily as one based on outward accomplishments. This kind sustains me through being bedbound or housebound when a good day isn’t measured by any to do lists being checked off or physical goals accomplished,  but rather mental victories of happiness over sadness,  positivity over negativity,  softness and calm over anger.

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Friday, 22 March 2013

6 Years of ME

t’s not the sort of anniversary I should really be taking note of, but I’m reminded every year as the anniversary of the day I became ill falls around four family birthdays.
I started to feel ill at a Saturday night birthday party then attempted to go to work on the Monday but I couldn’t go more than  5 minutes before I knew I had to turn around.  It was a steady decline of health from then. Six months on I  was diagnosed with ME / chronic fatigue syndrome. He we are, 6 years later. The prognosis at the time looked grim, and maybe I’m not cured, but I have a husband and two wonderful boys to show for it.

At the time I felt like my life had been taken away. Now I see, my life merely changed. Where ME / chronic fatigue syndrome takes away,  it also gives.

ME took away:
-Running,  dancing,  exercising,  walking long distances.
-My brain and ability to study,  formulate what I want to say,  think straight.
-A head and body free from pain, aches,  nausea,  tingles.
-Restful sleep.
-Having fun (or doing anything)  without paying for it with bad health after.

ME gives me:
-The chance to work out my problems and calm myself down without needing distractions.
-The opportunity to find happiness from within,  regardless of anything outside.
-A lesson in putting myself and my health first to benefit my family and friends in the long run.
-Knowledge of my body,  it’s limitations and the ability to listen to it,  know what’s good for it and how to manage it.
-Time to spend with the people I love most and who love me.
-People who have shown their true worth and love  through selfless service,  compassion,  understanding and just being there even though I can’t give back.
-The possibility to take leaps of faith and trust in my feelings.
-A knowledge of a higher power that lightens my burdens when they get too hard and knows my needs.

These lists aren’t extensive,  there’s more to each of them. Yet it’s easy to see from looking at them the gifts I’ve been given through this experience are far more valuable than what has been taken away. I still have faith and a hope that I will get better,  and I’ll be a better person because of this.

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