Things I’ve learnt since being a mum #MothersDay #SundayBlogShare

How many UK mums woke up this morning to luke warm drinks and cold toast served up on a tray with a side of daffodils?  Happy Mother’s Day, Mummy!  No, my lot are beyond that – in fact only one of them is here and she had to be dragged out of her pit.  But we did have our 7 year old nephew staying and he was awake bright and early – Uncle Dunc’s job to play, watch Lego You tube videos and generally entertain.  So I was greeted with an enormous shout of “Happy Mother’s Day, but you’re my auntie” as I entered the kitchen.

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Being a Mum

I haven’t heard from either of the boys in person yet…they may just be emerging from their pits.  The student engineer went out with his boyfriend and his parents last night, and I did try to wangle an invite too but the thought of us turning up sent him a delicate shade of grey, tinged with an air of panic!  But….yesterday morning the doorbell went at some unearthly hour and a delivery arrived for me.  From the politics student…for Mother’s Day.  Wow!!! Very impressed with a lovely box of chocs – but what is with the note?!

Olly gift

All the talk of Mother’s Day on TV & radio this morning has got me thinking about some of the things I’ve learnt since being a mum….

  • Yes the love is unconditional and two way – until you find felt tip all over the walls, or the lovely 12 year old turns into a teen….hormones, smells, trainers, mouldy food, and you are “the worst mum in the world” – maybe a little doubt creeps in
  • There is no right way to do it – but there is your way (and believe me it will be different to everyone else’s!)
  • Parenting is bloody hard and no it doesn’t get easier….it just changes!  Some days you will long for the time that your offspring was portable and could be strapped in to a carrier, rather than this 6 foot something hulk looking down on you determined to do his own thing.
  • An appreciation for your own mum – I’m lucky as she is my biggest supporter, has my back and is my friend.  Hope I can say this about me and my girl too. 

  • Breastfeeding is not the most natural thing in the world for everyone.  Yes I did it people, but…..all 3 babes struggled to latch on (another design fault in my bodywork), I spent weeks walking round with cabbage leaves in my bra and got a fab dose of mastitis each time….twice with the lovely girl, was seen by every feeding counsellor under the sun and had a “let down” reflex that was so strong it even tuned in to passing lorries, leaving me with rivulets flowing down my shirt!!  And….I had enough milk to feed the entire post natal class,  I kid you not, even my midwife asked if I’d considered donating some (this was before the days of internet breast milk sales….can’t get my head round that).  Of course now I take full credit for their combined intelligence as being completely down to my super milk and my bloody mindedness (10 months for the boys, 6 for the girl)
  • Just because your gorgeous toddler eats everything, including his greens, doesn’t mean he will not turn into the fussy eater from hell!  And leaving him with the food in front of him or telling him you are not cooking anything else…well if he is strong willed and bloody minded (wonder where that comes from) he WILL go hungry! Even in his teens and twenties!
  • The playground can be even more competitive as a mum than as a child
  • You really can’t do it for them, no matter how hard you might try – be it walking, writing, revising, taking exams or joining the world of adults.
  • When this human you bore is hurt, physically or emotionally, it really can hurt you more than anything else – strange, but true!
  • They may only  call when they need something (money, a lift somewhere), but it is YOU that they call….
  • Kids are expensive – a whole post in its own right!
  • My reserves run so deep – be it patience, impatience, anger, frustration, love – and I can cope with so much more than I would ever have dreamt possible.  But I still feel like the same person I was at 22….

So I am raising a glass to all the Mums out there past, present and future….and to all of us kids, be we babes or grown ups, for being some Mum’s baby.

Scan 2

How time flies….about 11 years ago!





The Blessed Project

Flicking through the blog posts on the blog share threads last weekend (Big Up Your Blog), one from Susie Lindau’s Wild Ride leapt off the page at me.  She has invited bloggers to join her in a very special, positive experience – The Blessed Project.

Susie says “Last year, I posted a list of blessings and included a few photos. The exercise took me to a place in my heart filled with love, gratitude, happiness, and sparkly things. My favorite! For the time it took to create the list, it banished bad news, headlines, and normal everyday frustrations like surfing to buy the perfect gift which is as slippery as Elf on a Shelf.”  What could possible be better at this time of the year than to focus on blessings…and some photos to embarrass your kids??

So where shall I start?

My family naturally…..hubby Duncan puts up with a lot, particularly on those flare days when I am horrible to be around, but he is always there.  He spends half his life running me to different hospitals across London and never (well almost never) complains and is always there to pick up the pieces – or just to pick me up!!

The kids… is challenging having the student engineer living back at home after 3 years away and my kitchen is living proof, but he is getting better at catching me before I pass out.  The middle one – do all middle children play on the old adage that middle borns have such a tough time? – is due home from uni next weekend and it will be lovely to see him (I think – dirty washing???).  We haven’t heard much from him, but presume that is a good thing – although he does send regular pics to his sister.  Finally my baby – my lovely girl.  She drives me mad with her untidiness, but she looks after me over and above what a teen should have to do for her mum – and constantly plays down the fact that she also has the same condition.

My parents – they live up the road and without them our lives would be so much harder on so many levels. Thank you, Mum & Dad!

Photo 28-06-2016, 12 15 43

Their first and only selfie!

My wheelchair – yes really!  It has given me a new lease of life as my mobility has decreased and pain has increased.  I have spent the last few years struggling to maintain some independence and to walk.  But the back pain initially and then the disabling effects of 2 back fusions (they really did add to my problems) and more hip dislocations have led to first funky walking sticks, then Smart crutches and now my wheels.  Not what I wanted during my 40s, but I can go out and join in! My eldest plans on taking me ice skating in it but I didn’t like the wicked glint in his eye when he suggested it!!

Friends who don’t give up on me when I blow them out, who stick by me and let me feel like the woman I used to be.  I also am very blessed to have a whole virtual friends family – bloggers and the chronic illness community who give such support and friendship…and “get it”!  Meeting with online Book Club friends at our annual birthday party was a treat.

I feel blessed to have found some kindred spirits this year at our EDS UK support group.

My furry friends – we have been blessed with some extra time with our elderly mutt, Sam, due to an understanding vet and painkillers (yes, for the dog!); but also our surrogate dogs, Chester who I love like my own, and Prince – both come round every week for walks with hubby and cuddles with me!



30 years on – meeting up with old school friends and feeling the years just slip away.  Hopefully staying in touch….have already met up with one and his family.Class of 87 pic

Finally….staying with the old school theme, I feel very blessed as the Chair of our alumni committee to have been invited to some wonderful events (Henley, the school drama) including the beautiful Carol Service last night in the parish church.  Talking to some of the parents and staff after, over mulled wine and mince pies, we all said that whether we were religious or not, it was a lovely way to start Christmas proper – putting aside the commercialism for just a short time and enjoying some true Christmas spirit.  There just might be a bit more of this spirit at the pub next week when I go to the One Term On event, for the youngsters returning after their first term at university…..won’t be staying too long as this old bird might really cramp their style!!!


Why don’t you link up your blessings with Susie?

Join the Blessed Project and Get Featured!

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The Blessed Project

I Am Here

I am here,

Do you still see me?

My heart is beating

Within my broken shell.

A mind is playing

The words of a lifetime

The will is surviving

To write a legacy well.SONY DSC


Am I succeeding?

Am I still growing?

In spite of a body

That creaks with pain.

My mind is creating

My will is still flowing

To harness experience

For a generation to gain.


I may be unseen

Not always present,


But can you still see me?

Here I remain.


Claire Saul

School Runs and Shopping Trolleys

My Monday Motivation to remind myself and others that no matter what, I can still make a difference!

Tips for Throwing a Party – from Julie at ME/CFS Self Help Guru blog

I might have mentioned in a post earlier this week that it is currently the return visit of our lovely girl’s German exchange partner…or more specifically the return visit of thirteen 15 and 16 year olds.  The British girls, led by our daughter, decided that they didn’t want to revisit the awkward first few days of getting to know you that they had in Germany – they have all kept in touch in the intervening months and wanted to fall straight into “having fun”.  So this meant all being together on their first night….but not in a formal setting of a restaurant….”really we just want pizza and music in someone’s house, Mum!”.

Hmmm……no prizes for guessing who hosted 26 youngsters on Wednesday night.  It did prove to be a great ice breaker and they were extremely well behaved (I think there was more noise last week with just 8 girls!). The lack of mess after a delivery of 10 takeaway pizzas, crisps and drinks was unbelievable.  Whilst I had little to do on the evening, the beginning of this week was busy and Thursday morning saw me have an incredible crash and symptom flare.  I am just so hopeless at pacing myself and saying no…..we had 4 staying last night after visiting Thorpe Park and I think there might be 6 tonight…..I think that I should have read this post by Julie a little sooner!!  Great tips here whether you are chronically ill or fighting fit!

13 Top Tips for Throwing a Party When You Have a Chronic Illness


A couple of weeks ago, I turned 50 and I really wanted to celebrate with a party. I shared the following tips in a Facebook live broadcast on the day. But just in case you didn’t see that or you prefer to take things in, in writing, I thought I’d share them here too, with the added wisdom of a little hindsight and an extra tip!

  1. Remember you’re choosing the consequences!

Sometimes we can choose to do too much, we just have to be willing and prepared to deal with the consequences (and what better excuse than turning 50!) I planned lots of rest before and after the party. Although my parents were coming to stay a couple of days after, they were warned that I might not have done all the clearing up by the time they arrived and that I would probably have to take it easy. I was willing to accept not feeling on top form for a while afterwards and when I felt rough for a few days I didn’t resist or resent it.

  1. Only invite people you really want to spend time with.

I decided I would only invite people that I really enjoyed socialising with.

To read the remainder of Julie’s tips please visit ME/CFS Self Help Guru

The Stresses of going to University for a Chronically Sick Mum!

I did it!  I survived the week in which the eldest child moved home and the middle one left.  Of course I have to point out that these are not sweet little children any more, but big, hairy men of 21 and 18 who have gathered the clutter of young adult life.

The eldest decided that it will be more cost effective to live at home for his fourth and final year, after paying the high costs of central London living for the past three years.  At the moment I am undecided who is going to find his return home hardest, him or us! His sister was distraught to find he was coming back – she thought that she would be free of both brothers….not one going and one returning!  Her plans to spread the art studio into his bedroom have been thwarted.  He has lived with the bright lights for three years, with only himself to consider (well, and the odd flatmate), whilst we have got used to having a spare room, a varied diet and no concerns about what time he is rolling out of London’s night spots, because out of sight out of mind, right?!

Stresses of Uni

He has already created havoc by deciding to decorate his room before moving back into it – but this has involved emptying said room onto the landing and then moving his flat contents back into the house, which are of course in the hall!  We cannot move for cases and computers and furniture.  So when son number two should have been packing up ready for his imminent departure do you think we could find empty cases?  Actually I don’t know why I am saying “we” as it was very much “I” – if it had all been left to him I’m not sure he would be there now!

This morning on waking with pain and fatigue running through everything, yes even my teeth, I concluded that this going off and coming back from university is pretty stressful.  “But it’s not even you, Mum!” each boy will shout at me, with no understanding that for me the decision to use up all my physical and mental resources, or spoons as we chronic community say, to ensure they are safe and sorted is a no brainer.  The journey from south London to Nottingham was hideous on Friday – there was an accident on the motorway needing an air ambulance, a huge detour and then arrival in the city at rush hour.  The B&B that I had booked, whilst fantastic in that we had a self contained flatlet, proved to be on a nightmare hill and in a huge Victorian house…and you guessed it our apartment was in the basement.  Not for the physically challenged – I needed my wheels by the time we got there – and also not for those trying to adjust to a brand new pair of varifocal specs.  So our arrival in Nottingham saw hubby in his new specs (he has never worn glasses before) trying to help me with my completely dead leg and back pain down a set of wet steps, whilst asking “Are these steps tilting to the side? I think they are at a funny angle”. NO!! It is your brain trying to adjust to new specs, but you are about to drop me…..


Anyway we deposited the politics student (more nervous than he would admit) to his new home yesterday morning and spent a couple of hours on the very hilly, but very beautiful University of Nottingham campus.  At lunchtime the canteens and coffee shops were full of anxious looking parents and equally anxious, but embarrassed IMG_1385

new students – my son commented that no one had managed to break free of the parents yet! Charming!! The funny thing is that it seems like only yesterday that my parents were dropping me at the nurses’ home where I would live for several years, and I can still remember that feeling of panic that I wouldn’t know who to talk to or where to go.  So it was with some relief that, having told our boy to leave his door open so that he could say hello to flat mates, he informed his brother over messenger last night that he was in the pub with his flatmates.

I can’t believe I am saying this, and I expect I will contradict myself over the next 3 years, but the pain, gastric problems, increased POTS symptoms and body consuming fatigue today, have all been worth it to hear him say “Mum, I can’t talk now, I’m going to the bar with new friends”!


Don’t tell him, but I’m actually a very proud mum!

Empathy isn’t just for Xmas

We have been so unwell since my last post!  Duncan and I haven’t stopped coughing yet, I lost my voice completely last week – much to the delight of the kids – and have forbidden the student from coming home as I’m sleeping in his bed.  I have missed out on the various nativity productions at my primary school and have cancelled so many socials with friends I have lost count.images (7)  Panic started to kick in at the end of last week when the cupboards were bare and the fridge was empty, so we hauled ourselves coughing and wheezing to the supermarket.  As friends commented that they were busy getting everything done for Christmas, I was thinking that I hadn’t even thought about it let alone started!  Going from post operative recovery straight into flu/cough for nearly 3 weeks has not been a great seasonal prep time.

I have to admit that I have struggled with my back – coughing is rough at the best of times, isn’t it, putting stress on the abs, causing headaches and stress incontinence for us girls.  So the added stress on a not quite healed operation site has been tough.  My implant site (right butt!) and right leg has been so sore that some mornings I’ve woken up feeling like I’ve been beaten up and even resorted to my post op naproxen again.  The stimulation has actually made my nerve pain worse whilst I’ve been ill – I wonder why?  After nearly 3 weeks I am so fed up!  But on the up side, I have managed to get into the hairdresser’s seat this week and it is official – I am no longer grey.  Thanks to my lovely friend Bev, I now look and nearly feel 10 years younger!  Duncan and I got out to a carol service for the other school where I sit on the alumni association – I sang the carols beautifully.  Really easy to do when, as you open your mouth, no sound comes out!  It was here that I was given a piece of advice from an old school friend who has lots of remedies from his Indian grandmother.  We do lemon and honey hot drinks (unless like my brother and I, you can’t stand the smell of honey – long story going back to our childhood, our great grandmother and pots of coffee “thickened” with honey!!) whereas he recommended turmeric in hot water…..mmmm, delicious!  But I have been that desperate that I would give anything a go and, sweetened with a spot of brown sugar, it has proven oddly soothing.  Duncan has been well enough to drive to his parents today, we have shipped the teenage daughter off to stay with my brother and sister in law (thanks, Sandra!), and the boys are still at school/uni……so I am enjoying a glorious couple of days in an empty house.  Just me and my dog and rubbish Christmas movies……

For this is the season for goodwill, over indulgence, sentimental tv and bonhomie, isn’t it?  How many of us struggle to maintain the cheerful face as everyone around us appears to be having such a fantastic time?  Whether it is loneliness, grief, poverty or illness, there are a myriad of reasons out there that actually make this time of year very difficult for some of us.  Guilt is another emotion that gets in the way.  Guilt that you aren’t feeling jolly; guilt that your condition is keeping your loved ones from the activities that you feel they should be a part of; guilt that others feel that they must tiptoe around you; guilt that you can’t do for your friends and family what you would want to; guilt for feeling jealous of them.

It really is so true that when the chips are down, we find out who our friends are.  Over the twenty or so years since I have had my back problems, I have been surprised more than once by both the friends who have stepped up with support and those who have not!  This old adage is even more true with a chronic condition.  I am well aware that for some people my disability makes me a bloody nuisance these days, but it can still be hurtful.  I don’t want to have to constantly ask for a lift for instance, but when “friends” just no longer even think to ask or offer it is tough.  I was listening to the fantastic Adele’s song “Million Years Ago” and she seemed to be singing my song when she describes “not being able to stand the reflection I see; my life flashing by; missing my friends, when my life was a party to be thrown; but that was a million years ago”. images (8) I can see my friends’ lives moving on, careers unfurling, travels taking them far and wide, and I do feel that mine has come to a stand still.  Self pity?  I hope not.  More being realistic and understanding my limitations.  Note to self – New Year, new pain relief with the scs, new stage in my life!

I received a text today from a very supportive friend apologising for being a “rubbish” friend for not being in touch recently.  Yet her teenage daughter, who has an Asperger’s diagnosis, had tried to commit suicide.  Have you noticed that it is often the people who are in the most difficult situations themselves, who are also the very people who do make the time for their friends in need? I guess this goes back to the “when the chips are down” again – when we have been there maybe we develop a heightened empathy.  A friend who has been particularly supportive of me and of Duncan since his  mental health breakdown last year, has undergone her own battle with breast cancer, including extensive reconstructive surgery earlier this year.  Kylie Minogue took the time to surprise a young woman in her home, with a party live on a BBC show last night to “thank” her for the work that she has done for a breast cancer organisation.  What marks her out is that she was undergoing her own treatment for breast cancer, diagnosed in her late twenties, looking at the possibility of infertility, and yet pushed herself to run marathons, fund raise and praise the bravery of other women around her.  Of course Kylie had her own personal experience to drive her to want to do something for this young lady.

download (1)Christmas!  Looking on the bright side, Star Wars is back in our cinemas, the X Factor has finished and Jose Mourinho has been sacked……sorry, Duncan!