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Chronic Illness and the Employment Trap

Here is a little something I posted on LinkedIn today, I wanted to share it here too as I think it is such an important issue to so many.

The Silent Brain Drain in the UK

I have had a job since I was 15 years of age and I am now 45. I have two Degrees and a Masters. I am a qualified solicitor and now I also have a chronic illness.

I developed my chronic illness about 4 years ago. It went unidentified for some time but my diagnosis is Fibromyalgia, Chronic Pain Syndrome, and Chronic Fatigue Syndrome. There is no cure. I was working full time, commuting into London each day and added to this I am a single mum, but then I became sick. My sickness is unpredictable and I often have to manage it day by day sometimes hour-by-hour, it manifests itself in extreme chronic pain and exhaustion. I’ve had to learn how to manage my illness, I really need to be mindful of how I spend my energy,  as we all do, but my energy is more obviously finite than other peoples. I am able to function perfectly well if I pace myself and put plans in place for this. I can use my brain and work but if I have to commute to my job first then that’ll be my energy for the day, the next few days possibly, already used up. Traditional notions of full-time work, or just work in general, are no longer an option for me, so what do I do?

Flexible working is a hot topic at the moment in the world of work and so it should be. We need to rethink how we as Society perceive the way in which people work. I feel I have a lot to contribute but as I no longer fit into any of the templates available for work I am now being forced to drop out of the system. There are thousands of people in my position and the only way to address this successfully, I believe, is to to have an overhaul of how we work and the structure in which we work. Anna Whitehouse at Mother Pukka is passionate about the issue of flexible working and I believe that for people in my position she is a real champion, also for parents, carers, anyone who has requirements that see them with needs that fall outside traditional work norms.

We aren’t going away, we won’t fade into obscurity just because we are not facilitated, in fact, the people losing out are the employers. We are the silent brain drain. #flexappeal #flexibleworking #chronicillness #silentbraindrain

 

Cause it makes me that much stronger, Makes me work a little bit harder

I have been a member of the Spoonie community for a lot longer than I realised, I was diagnosed with a chronic liver condition (autoimmune hepatitis) when I was 24, and will be taking medication to keep it in check for the rest of my life. But as long as my liver behaves itself it really doesn’t have a huge impact on my life, you wouldn’t know I was unwell at all, no time off work, no physical difficulties, but then I became really sick a few years ago and I became a fully fledged member. Hello, chronic pain and chronic fatigue, fibromyalgia and arthritis!

It often feels like these are impossible conditions to live with and I really do mean ‘live’, because at it’s very very worst it doesn’t feel like you are living. You barely exist and often feel like you are actually dying, of pain or exhaustion, of memory loss, of the inability to think at all. It is utterly and completely soul destroying and you don’t even need the wee small hours of the morning to impress upon you the isolation, the unending trauma and the fact that no one at all can tell you when and if you will ever feel any better than you do right now. Draaammmmaaaa! Well, no, not really. I have often heard people refer to different phases of their lives, such as before children and after children, but my life is defined by before chronic pain and after it started. I cannot impress upon anyone how completely my life has been altered by this condition, I have no control over my own ability to function. Told you I wasn’t being dramatic.

But I am a very practical soul and have spent, and continue to spend, a great deal of time reading up about developments in my conditions The British Medical Journal is always a great source of info for latest studies and research and I have seen some of the doctors I have found through this research. I refuse to believe that this is it, that the medical profession has reached their conclusions and that there will never be a better way to treat my illnesses. I have investigated and tried many medications and assistance aids over the years and, while I am not going to write about the meds right now, I thought I would share some of the assistance aid purchases that I have made that have actually helped.

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My faithful Yuyu

First up is the Yuyu, a long hot water bottle that you can sling around your neck, it comes with a tie at each end so it can tie it security around your back and walk around quite happily. Why no one has thought of this before I have no idea but I quite happily wear mine under my coat on old winter days when I collect Lu from school, I suffer from excruciating pain around my right shoulder blade so I can manoeuvre this like a jaunty sash and it eases the pain. Cold is a real issue for exacerbating my pain so this has been a godsend. They are a little dear, starting at £33, but to me, mine has been worth every single penny and maybe something to ask for as a Christmas gift.

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Multitasking. Please excuse my terrible taste in Tv programmes. Catfish is a real weakness of mine.

My second useful item is a bed desk on legs, specifically made to use with a laptop so it has holes allowing the computer to cool down. No more hot laps and wondering if your computer is going to go into literal meltdown as you binge-watch Netflix as sometimes when bedridden box sets are the only thing that one can do to pass the time. I got mine from Amazon.

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All the hospital glamour.

My next recommendation may seem slightly odd but works for me. Soft blankets, the fleecy type, when my skin hurts and I ache inside the thing that helps the most is lying on one in bed and having one to cover me, its something about the softness that I find comforting, a bit obscure, maybe its a infantile cozy security issue that one needs to fulfil when feeling so so sick but it does help my pain. I took one to hospital with me to lie on when I had my last procedure and I tell you it made it more bearable, even if I did get odd looks. I have a few of these ones and a few of these. They are relatively cheap, Primark does good ones as do most supermarkets.

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This doesn’t come with a cover, the thing you can see to the left is part of the Starship Enterprise that Lucia has been making out of a cardboard box.

Next is a lightbox. Being inside so often, not always able to do the obligatory go outside and see the daylight means I suffer from SAD, and actually I have for an awfully long time so to address this I got myself one of these and it has made a huge difference to my mood, I’m not composing poems to the beautiful sun but I am feeling less blah. I pop it next to my bed, in my living room or on my desk, whenever I go it comes with me and I have it one for maybe an hour a day.

Finally, let me introduce you to the thing has diminished my physical pain by the most. It is a neck support memory foam pillow which has a large or small hump, depending on which side of the pillow you use. I don’t really know how to describe it, so when you put your head on it your neck is supported and your head almost dips back to what would seem a much more natural position when sleeping, it is hands down the best thing I have ever bought and the thing that I cannot be without. I take it on holiday with me, I take it everywhere I will be sleeping. See the photo for the humps and a soft blanket thrown in.

It is worth noting that all of these aids are portable and the fact that I can take them with me places means that I can go places without having to reap not only the tiredness of travel but also the setbacks caused by compromised comfort.

Amazon also deserves a shout out for those of us who are housebound or lead lives of unpredictable ability. I pay the subscription for Prime next day delivery and it has been my saviour, my contact to the outside world. Let’s face it chronic illness means our best-laid plans are often thrown into turmoil within a matter of hours and something that was as simple as a drive to shops to pick up a gift for someone’s birthday becomes an impossibility. So it has enabled me to order everything from birthday gifts for my daughter’s friends parties to straw for our house rabbit, all delivered in a timely manner. Mostly.

I have no affiliation to any of these companies but thought others may find this information useful, either for yourself and or someone you know.

Guess who’s back, back again

Goodness wasn’t that a very prolonged sabbatical – sounds as if I was doing something worthy and important doesn’t it? I wasn’t I was just very very sick for a really really long time and now I am still sick but everything else in my life that could possibly have changed has, so now is as good a time as any to start writing again. I enjoy it and now that I can see properly and am not lying down for most of the day I feel I can accomplish that. The writing bit.

So, I think I’ll approach the changes in time order, seems logical.

In May last year, my sickness became unmanageable, I couldn’t walk, I couldn’t see often, I couldn’t stay awake. and I was signed off work. New meds, a new experimental treatment, a lot of pain. By Christmas my position at work was untenable and we parted company. It seems odd to see it in a concise sentence as it was such an all-consuming stressful awful time of anxiety. After all, who can afford to just a lose a job? I am a single mum, single income household with a mortgage and bills and all the grown-up things to pay for. In fact, the stress added to my illness so it was an awful vicious circle but I knew that there was no way I would be able to work in the same way I had before, even if I wanted to I physically could not cope and my body would not cooperate.

In February this year, I got married after a rather short engagement of 6 months, though a relationship of nearly 5 years now. However, we still live apart, him in Oxfordshire and me in Buckinghamshire, as selling houses is complicated! I know, first world problems, and when it becomes frustrating I remind myself that I actually own a house, I never thought I would be in that position especially after my ex-husband left 6 years ago and was awfully keen on selling our home…. that’s another story. Anyway, the plan is to sell our homes and buy a home together, one that fits in all the children, my one and his two and any other little one that may come along. The plan was to stay in Bucks but our hearts now belong to the Cotswolds so we will see. We both have children and they remain our priorities when it comes to decision making.

In March we went off on honeymoon to Seychelles and started trying for a baby. We are rather old, I’ve just turned 45 and he is 51, and hold out no great hopes, we know the odds, but we have decided to give it a year a see if we get lucky, if not we shall get more mini dachshunds and be happy. Due to my illness’, well really due to the meds I take it has been a very calculated plan including the withdrawal of many of my meds which are not suitable to be on when pregnant and the reintroduction of some old friends – hello prednisolone steroids and huge appetite – to try and stop my liver from coming out of remission. I have also had to give up all my heavenly pain meds, but it is worth it. So far, I’m monitoring it with blood tests and have had a little hiccup but on the right road now. I also have a history of miscarriage and my daughter was 3 months premature so my Early Miscarriage Clinic phone number and blood thinning meds are within arms reach should I see that lovely little line indicating pregnancy.

I do love a project, it gives me something to focus on, so I have stockpiled Ovulation tests and been plotting my cycle on a fab free app called Flo. In fact, my dedication meant I met my husband in North Carolina for a week while he was there on business. It was my predicted ovulation time and as I said we don’t live together so we need to take all the opportunities we can. And a week exploring somewhere new is fun. I can highly recommend Wilmington. It’s where Dawsons Creek was filmed, in fact, it is where loads of things have been filmed. I had the luxury of meandering around all day, sitting in the sun, drinking coffee, making friends, it was wonderful.

In April I set up my own business but more of that later.

The constant has been my darling daughter, her very existence made the darkest of times bearable and always always gave me a reason to keep going.

I feel I should have returned with a shiny new look to the blog too but really I just wanted to say hello.

Birds do it, bees do it, Even educated fleas do it

When I produced my little bundle joy six years ago I though, rather naively, that I would not be addressing any questions regarding baby making for at least 10 years but little did I know that as Lulu as I sat in a bath one Tuesday night recently she would say “mummy, how do you do sex?” OMG

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My very litle girl

 

 

 

 

I didn’t want to scare her by saying words she didn’t understand, erection, vagina etc and I certainly didn’t want to make her feel like she had done something wrong by asking but goodness, I was not prepared. I was so conscious that I had to answer in a way that didn’t make sex seem bad or wrong – who can afford those psychiatrist bills when she is all grown up and blaming my crappy explanation on her dysfunctional sex life? But I didn’t want to be flippant either and avoid the subject. Were they discussing it at school? Had I missed the memo? So, I did what everyone does in situations where you have no idea what to do, I asked her a question back “oh ok darling, where did you hear the word sex?” I needed some sort of context. “Was it at school?” “no” “Did one of your friends say it?” no” “Where did you hear it?” “oh i just did”. I then asked her what she thought sex was? She said it was when a boy lies on top of a girl and they kiss, I started to panic, What had she seen? Where had she seen it? Why don’t I put parental controls on her iPad?? Instead I rely on her telling me when she comes across something inappropriate so we can discuss it but obviously my plan had failed. I had fallen at the first hurdle of grown up parenting. Then I remembered that I caught her watching YouTube clips of people kissing from the comedies she likes, Full House, Fuller House and of course on Gilmore Girls. I say caught, not because I don let her watch kissing but when I peered over her shoulder at the iPad she was shielding from me she was so embarrassed by the kissing scenes. These family comedies have the inevitable coming of age teen bit involving first boyfriends and first kisses etc, being walked in on by the little sister while ‘making out on the couch’ all golden family comedy scenes, ones that never occurred to me would produce questions from Lulu but I was foolish, of course she is wondering what is going on, the characters probably had the inevitable ‘parent teen’ chat about waiting until you are ready for sex blah blah blah

From what I could glean she was actually enquiring in relation to how babies are made, so I told her that when people are grown ups and in love and they want a baby thy have sex, which means the man puts his willy into the womans bottom because a lady has eggs in her tummy and the man can make this eggs into a baby- in have my home we don’t have two distinctive words and we currently rely on back and front bottom (arrrgghh how I hate that term) but I prefer it to flower, tuppence, fanny etc. I have asked many people what they refer to their vagina as to their children and have yet to come up with a word I can say without visibly cringing. Which is a shame because vaginas are pretty great. lu said ‘Oh, like a chicken has eggs inside her?” ‘yes, exactly” Anyway Lu seemed totally happy with this explanation, I asked her if she had any more questions to which she said no and it was back to the bath time Barbie party. Oh, she did ask if me and her daddy (my ex-husband) had ever had sex and I said “of course darling, otherwise how did we get you?.”

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I did impress on Lu that having sex is a very serious thing and not to be taken lightly and that it was only for adults, not for children. As she gets older we will obviously discus the finer details but for now I was satisfied that I had answered in way that was age appropriate and addressed her queries. It was also an opportunity to talk about our private areas being just for us and that no one else should touch Lu there and if they did that she needs to tell mummy or daddy or a teacher. Exactly the same way if someone is horrible to her at school. I don’t want to make her fearful but it is a good age to start discussing personal boundaries and what is and isn’t acceptable.

I was relaying this tale to some friends who pointed put that maybe I should be more accurate re which bottom (front or back) so in passing yesterday I said to Lu that the willy went into the front bottom, she was horrified, “”How does it get in there?, in my mind I saw the missionary position as a good starting place but stopped short of saying it out loud and just re assured her it worked fine when necessary.

 

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Lu makes me take her toys to work, frequently

It is not my intention to ever make Lu think that the only romantic relationship are those between men and women, and I have being using her Disney princess obsession to address this subject with her. Lu is totally on board with the idea that Princes can marry Princes and Princesses can marry Princesses and that the fundamental basis of any relationship is love and kindness, not gender. She is also aware that it is possible for two men who are together to have a baby, according to Lu they ask a lady to “get them one” (?) and that if two ladies are in love can “get their own baby”….

But the last day of summer Never felt so cold

This year summer seems to be over as soon as it began for the school age children. All the good sunny weather happened before they broke up but I am pleasantly surprised that it remains light for so long in the evening still, 9pm last night. I know this specifically because I went to bed for a nice afternoon nap at 3pm having got home from work and a lovely lunch catch up with a friend. I woke up at 8.30pm and was completely confused, I thought it was morning because of the daylight outside, I was in a completely disorientated panic which lasted about half an hour. Horrid adrenal pumping head ache inducing way to wake up.

 

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But I know that soon the evenings will be drawing  in and eventually I will find myself in a subterranean like world of leaving for work in the dark and returning home in the dark. I am a huge fan of autumn and winter, of Christmas and lamplight (so good on the complexion), of cosy blankets and bed socks but equally I suffer from SAD (Seasonal Affective Disorder).

The NHS define it as follows:

“Seasonal affective disorder (SAD) is a type of depression that comes and goes in a seasonal pattern.

SAD is sometimes known as “winter depression” because the symptoms are more apparent and tend to be more severe during the winter.

The symptoms often begin in the autumn as the days start getting shorter. They’re typically most severe during December, January and February.

SAD often improves and disappears in the spring and summer, although it may return each autumn and winter in a repetitive pattern.

Symptoms of SAD

Symptoms of SAD can include:

  • a persistent low mood
  • a loss of pleasure or interest in normal everyday activities
  • irritability
  • feelings of despair, guilt and worthlessness
  • feeling lethargic (lacking in energy) and sleepy during the day
  • sleeping for longer than normal and finding it hard to get up in the morning
  • craving carbohydrates and gaining weight

For some people, these symptoms can be severe and have a significant impact on their day-to-day activities.”

If I am not mindful then it can end up utterly flooring me. It doesn’t happen over night, it is the slow creeping in of lethargy, equaled to the diminishing of day light. Life starts to feel flat, if I don’t start dragging myself back up he hill at that point then the feeling can remain with me for months.

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I have no magic remedy, though I have found SAD lights to be very effective, 10 mins a day while at work. I have been lucky enough to have at least one exceptionally hot and sunny holiday each year so I feel I stock up on sunshine and energy. But I am also kind to myself, darkness does produce lethargy, that is normal, just as the spring sunshine makes us want to throw on coats and go on long fresh walks.

I’m not trying to wish summer and sunshine away but I know from experience that now is the time to start thinking about where I put my SAD lamp, time to transition into the new season in the healthiest way I can.

Marking the transition of seasons, as ridiculous as it may sound, helps too, so it isn’t just the long stretch towards Christmas (the best time of the year ever) that we are waiting for. And I love an excuse for a celebration. One of my favorites is the Autumn Equinox, Mabon, it happens around 21st-24th September, the The White Goddess tells us the story behind it:

“Mabon marks the middle of harvest, it is a time of equal day and equal night, and for the moment nature is in balance. It is a time to reap what you have sown, of giving thanks for the harvest and the bounty the Earth provides. For finishing up old projects and plans and planting the seeds for new enterprises or a change in lifestyle. Mabon is a time of celebration and balance.

This is the time to look back not just on the past year, but also your life, and to plan for the future. In the rhythm of the year, Mabon is a time of rest and celebration, after the hard work of gathering the crops. Warm autumn days are followed by chill nights, as the Old Sun God returns to the embrace of the Goddess.

The passing of Mabon is inevitable and The Sun God should be mourned. We too, must remember that all things must come to an end. So the Sun God journeys into the lands of winter and into the Goddess’ loving arms, but endings are a good time to celebrate our successes, thank our selves and those who helped us, and take part in the balance of life!”

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Gonna dress you up in my love In my love

Yep, my spending ban went out the window a while ago and I’m not sure why. I have never really been into fashion or shopping but damn the ease of online shopping and all the pretty clothes the people I follow on Instagram wear.

I must admit though that I fear my shopping habit maybe a smidgen out of control and as such I have reigned my self in entirely, I think it has to do with not feeling very well or happy, new clothes cheer me and maybe it allows me to be someone else, just for the first few moments I put a new item on, someone who is capable and wears nice clothes….a proper grown up who is in control.

Realistically aren’t we all just waiting to be “found out” for the “no idea what we are really doing” frauds? Crikey, I digress, this is about clothes not psychoanalysis.

So this is a round-up of what I thought proved  rather popular this summer,

Bardot tops, and dresses – so pretty and feminine but not for me, big busted. But how gorgeous is this.

This was the year of the pom-pom and the tassel for interiors, clothes and accessories. I coveted many colorful pom pom embellished bags and sandals but didn’t succumb, however I did cave in to my desire and bought these tassel earrings on Amazon.

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My partner seems to think look rather odd, admittedly when I wear them I do feel a bit of a fashion fraud, perhaps more of a Pat Butcher than the ever stylish Erica Davies I was going for. So I have ordered a few other sets fron the lovely Alice’s Wonders, see below, for my upcoming holiday. I think I can carry these off.

Boho dresses were big news, Next did a good line aside Zara, see below, but not really my thing, I am rather small in stature and feel a little mumsy in mid length blousy things though I do love them.

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Zara £59.99

Yellow was a popular colour, remember ‘that’ yellow M&S dress. If it’s good enough for Vogue…I dabbled by buying a long-sleeved blouse but am always so worried about looking jaundiced so that was about as daring as I got.

French market baskets and the round straw hand bags were everywhere, often seen filled with pink peonies casually placed in a beautiful stylish kitchen. Despite being so summery I just couldn’t justify the purchases as I have many bags and a few baskets already.

 

Slogan tees continued their reign with feminist slogans leading the way, as it should be! I got a few from Girl vs Cancer, I went for one saying “Lady Lumps”, Love4Grenfell(see Lu modelling it below) where all profits go to those who are victims of the fire. This is a place very close dear to me as that tower was my first ever home. and Topshop.  The feminist slogan was having a real moment, and not one that will end I hope.

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My only issue being the sizing as a big boobed lady a round neck isn’t very flattering hello mono boob, a v neck is much nicer, but not very available in this genre of t-shirt. And to fit my bobs in I ended up with Large sizes, so the t-shirts ended up as rather short dresses, not the casual wear with jeans number I had envisaged, and as my Instagram told me it should be but i love them none the less.

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Love4Grenfell £10 plus P&P

Turns out good old Marks & Spencer was my go to shop this summer, with a smattering of Next, Topshop and H&M. I also couldn’t resist a few dresses in the Zara sale. I chose Gingham, which also made an appearance this summer.

Now who are these ladies of impeccable fashion taste that I follow, well here they are

The Fashion Lift

The Edited

The Frugality

Chloe Loves to Shop

Little Spree

Violet and Percy  This blog/shop has an emphasis on lifestyle and interiors but occasionally you get a peek at Flora’s outfits and they are always great, so much so that I saw her wearing a pair jeans in a recent post and they looked so amazing that I asked where they were from and immediately bought them all with in a 5 minutes of her photo appearing, isn’t social media super?. In case you were interested they were the High Rise Wide Leg Jeans from Gap which are now on sale, completely out of my comfort zone but I adore them.

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I really looking forward to what Autumn/Winter brings in the world of fashion and am so pleased I have discovered these woman who inspire me. For the first time ever, in all of my 43 years, I am thoroughly enjoying buying new clothes and trying new styles.

 

 

Lucky that my breasts are small and humble So you don’t confuse them with mountains

My name is Miriam and I have rather large breasts, they can make my back ache, my shoulders can hurt from the straps and they cost a small fortune in bras. However, I know that this doesn’t have to be the case all the time and properly fitting bras and undies can make the world of difference to posture, mood and attitude. Added to these reasons is the fact that after 43 years I have learned to love my breasts. I no longer view them negatively, as the cause of great uncomfortableness due excessive male attention and cat calling, non stop bouncing when moving in excess of a fast walk, the need to buy tops 3 sizes larger than my bottom half, they are not horrid appendages that I cover up but are part of me, and right now I really like me. So in celebration I recently cleared out all of my old underwear and repurchased nice new properly fitting bras and knickers, lots of them. Out went the bras that sort of fit but I kept having to heave them up to avoid the 4 boob situation and out went the knickers with holes in as well. My boob size has whizzed up after being on such a large amount of meds, bloating, steroid weight gain etc, but despite having lost some of the gained weight my boobs firmly remain a 36G (see feature pic where my cup size would fit me as a hat). It wasnt cheap by any stretch of the imagination. But I am lucky enough to have a boyfriend who was so fed up of listening to me complain about my uncomfy bras that he gifted it all to me. I shopped online at both Bravissimo and Figleaves, sticking with the brand Freya for sets and some Panache knickers.

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Same as above but in Sand

 

If you are bra buying then I would highly recommend Rigby and Peller, the Regents Street branch, the staff are a delight to encounter and the bras spectacular. You don’t get physically measured they look at your boobs and make their prediction, and they are always right, but I can no longer afford £80 plus for a bra though they are wonderful.

John Lewis are my general go to for measuring and fitting, good array of D+ bras, excellent service and very informative. But when I was pregnant the lady flatly refused to let me have an underwired bra……she clearly did not know the agony of carrying around these puppies and a huge tummy, I am only 5ft 2 (and a half). I ended up with a big mono boob, sweaty and vile, for the whole pregnancy. I should have just bought what I wanted but it was my first (and only that lasted more than 12 weeks) pregnancy. What did I know!!

Bravissimo are also rather good. In fact they were, and remain, the company who are dedicated to larger busted ladies, their clothes range is wonderful too, though a little out of my price range. I particularly like the fact that in each dress size they also specify Curvy, Really Curvy or Super Curvy in order to accommodate boob size. Their motto is “Clothing designed with your boobs in mind.” The fit is excellent, I have a three of their dresses that I bought a few years ago for weddings.

I have had terrible experiences at Marks and Spencer’s when it come to bra fittings, at multiple stores, such a shame. I have also found that their plain cotton knickers just don’t seem to be as well wearing as they used to, the material also seems a little thiner.

As I now live in the sticks and have no desire to schlep into London on the weekend since I do it for work all week, I have taken to measuring myself, and quite sucessfully, though be warned, the same bra size in different brands can come up significantly different. I found this out a few years ago when I was first measured at Rigby and Peller. This is mainly why I stick to Freya, they are true to size, exceptionally comfortable, pretty, not those huge matronly looking things that used to be the only options, and they are reasonably priced. I orderd some Panache bras in the same size and they were simply huge, so back they went.

I also sleep in a bra, yes, an underwired one. It is so uncomfortable for me not too. But I also have a couple of lycra bra tops I sleep in though admittedly the support isn’t as good.

Having spent a small fortune I decided to look after the bras properly, this involves hand washing them every 2 or 3 wears with a liquid for delicates. I’m going to get as much use of these comfy perfect garments as possible.

I must add that it is a mystery to me that, when I already have such a large chest, so many bras in my size are essentially padded. I have no desire to minimise my chest size but neither do I wish to enhance it with an additional bulky layer. But each to their own.

And I wonder if you know How it really feels to be left outside alone

Duvet days

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Baby Lulu helping Mummy out with the guest list at Fabric

A friend of mine from Instagram recently posted the following quote ‘main caption above recently. She is a fellow spoonie, a fellow endurer of autoimmune disease and chronic pain and fatigue. Her post got me thinking a lot about how being so unwell really changes ones relationships in a way that can be really hard to deal with, from both sides. I spend my time either at work or at home, there are no other destinations for me these days. I am too tired, too sick, in too much pain. This is not how it used to be. I have spent half a life time working in clubs, I am a naturally sociable and curious person, I like being out and about, meeting people, talking, eating out. Having fun.

If I thought having baby might curtail these activities (it didn’t really, my ex husband and I just let Lu slot into our lifestyle, with a few less ‘out until at dawn’ scenarios) then it had nothing on that the impact developing fibromyalgia had on my life.

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Pimms in Nottinghill

I understand that at times friends don’t ask me to go places because they know I won’t be able to and I imagine that they don’t want to put pressure on me or make me feel bad when I decline. I cannot cope without rest, lots of rest, so that does put a stop to evening afterwork shenanigans. This has also meant that I don’t make plans anymore, ever because I have had to cancel at the last minute more often than not as my illness varies greatly day to day, I could be fine one day and then barely able to walk the next. I hate hate hate feeling like I have let people down so now I just don’t make any plans. I spend my evenig and weekends with my mum and my daughter. I know it probably isn’t hugely healthy, that I should be with friends, to let off steam, chat, be ‘me’ but we don’t always get to do what we want. I know I am doing my best.

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Lunch at the Oysterage in Orford, Suffolk

I’m not trying to do anyone a disservice, maybe the people who don’t ask me just don’t wat t see me, I can accept that! But for those who do like me, it is really important for me to still be asked to spend time with you, it makes me feel valued and wanted and all those things we are never meant to rely on other people for but we do. Each time a friend invites me to do something, knowing that I will probably say no or cancel at the last minute, it makes me feel really included which is so important when one has an illness that can be so debilitating and isolating.

So please, if you have a friend who is unwell, be it depression or any other illness, please remember, when they say no to an invitation, don’t be hurt, don’t vow to not bother again, it matters that you asked, it matters so so much.

 

Hold on, We’re going home

I spent my whole childhood and adulthood living in West London, save 5 years at uni in Liverpool, in fact I only moved out of the area when I was 37. It is my home, my place, my familiar.

My mum and I started off in the area housed in bedsits in Paddington, I was 18 months old and my mum was a lone parent at the age of 23. Westbourne Gove and Queensway weren’t the cafe strewn Daylesford organic destination they are now. It was grotty hotels and a little down at heel but the area has always had quite a stunning mix of very wealthy and very poor residents. See the multi million pound houses for sale in Blenheim Crescent that lead onto those gorgeous private gardens you glimpsed in Richard Curtis’ Nottinghill and then remember the council housing estates at the end of  the same road.

And it was into one of these council blocks that my mum and I moved for our first ever proper home. Flat 152 (floor 15, flat 2) Grenfell Tower, Lancaster Road, W11, the Royal Borough of Kensington and Chelsea. We moved into our flat as soon as the building was completed but the greens at the base of the tower block were still rubble and the landscaping continued for a while after we arrived. It was big and shiny and new, all 23 floors of it. Our flat was one of two on the far right hand corner when you exited the lift. From the windows we could see what was to be one of my primary school, St Clements. My orignal primary school St James burnt down when in was 9 so we were all moved to first Avondale and then portakabins in the playground of St Clements, which has since closed. Far in the distance you could see Holland Park, Portobello Road and the old BBC TV Centre in Shepherds Bush, though as hard as I tried I just couldn’t see the Blue Peter Garden. Don’t worry though, I got to see it a few years later on a school trip. Woohoo. Remember when Blue Peter used to do these huge balloon releases, and they had tags attached, if you found one you wrote in and got a prize? I used to watch those but never found a balloon.

Grenfell Tower was a lovely community, my mum made friends, I made friends, it was clean and safe, though that wasnt the rumour in the neighbour hood. Believe it or not the milk man used to deliver to all the flats. That stopped after a couple of years for rather unsavoury reason I believe.We had a two bedroom flat and for the first few months all we had a rocking chair and a mattress to adorn it, very minimalist, but after my grandma gave us some money we also got a sofa and a cooker – fancy huh!

We were exceptionally high up but our neighbour, Bob, used to clean windows in the block and my mum would always hide in the bathroom as she couldn’t bear watching him clinging to the outside of the building while he washed and cleaned. Nothing fazed him, remarkable really, but obviously something that would never be allowed to happen now.

We were burgled once, poor fools, we had absolutely nothing for them to take so instead they ripped up every singular one of my mum’s photos into tiny irreparable pieces. This was in the 1970s, the days with out back up disk of pics, if you didn’t have the negatives then bye bye photos. That is why there is not one singe baby picture of me. The police told us that the burglars were clearly pissed off and decided to ransack and ruin the place instead, but honestly who burgles the flat of a single mum in a tower block, what were they expecting, jewels?

We had made friends with a lady and her daughter who were on the 7th floor and I remember being invited for a birthday tea  but of course my mum had no money to buy a gift so we found the smartest looking of my Ladybird books to give as  gift. I remember to this day being very sad as I loved each and every one of my books but needs must. No one living there had any money, that’s just the way it was.

There were a few fires while we lived there, basically people setting fire to the rubbish chute which ran from the top of the building to the bottom, ending in big bins at the bottom. I remember my mum bundling me up in a duvet and carrying me down the 15 floors in the middle of the night and we would stand outside with all the other pyjamaed residents while the fire brigade did the necessary.

Despite being such a new building the lifts, 2 of them, were frequently out of order and my mum suffered from quite bad back problems, still does to this day, and she sensibly decided that carrying a child and/or shopping up and down 15 floors was going to do nothing to ease her pain so she applied to the local housing association for a ground floor flat and we were given one, down the road, near the Elgin Pub, anyone remember that place? and just off the Nottinghill Carnival Route.

And that where we remained for many happy years. We moved in there in time to celebrate my 5th birthday. Did we miss Grenfell Tower, yes we did. I have only happy memories of living there and now it is all gone. My mother woke me up on the morning of the fire to tell me it had happened. I was shocked and desperately saddened, all those people, all those children, one stair case. It really doesn’t bear thinking about.

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Me and my mum lyrics home london rain

I rarely return to the area these days, I moved out to Buckinghamshire when I was pregnant 7 years ago and I work near Euston but yesterday I returned to Holland Park to see my dentist. I am completely dental phobic and refused to move from the chap who has looked after my teeth for the last 30 years. As I walked down the avenue, loving the leafy trees and reminiscing I knew I would eventually view the tower, I searched the skyline as I crossed each road and finally there it was, a black smudged shell. You could see the day light streaming through the smashed window and out the other side, it was a shocking sight and I can only imagine how terrifying it had been for all involved. My mum won’t go and see it though she wants to pay her respects, it is too much for her.

I couldn’t think of anything to do to help, practical donations of clothes and food had flooded in, to help those who needed assistance, thankfully. But I did see that there were T shirts available to buy where the proft went towards a fund for the victims, so I ordered one. See Lulu in the main picture wearing it, and below.

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All profits from t -shirt sales go to residents 

If you would like to buy one they are £10 plus postage each and available online at http://www.love4.london  All profits goes to the residents affected.

 

 

 

 

 

 

 

Let’s find a cozy nook Beside a babbling brook

I haven’t really wanted to write for the last few weeks. Every day brings more awful news and no words I have can do the events justice, so I have done the sensible thing and remained quiet. However, Lulu and I did have a lovely little mini break a short while ago and I wanted to write about that, particularly now as it brings me very happy memories.

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Huge deck chairs

As a single mum I am the one that makes Lu do all the boring unfun things like homework, and going to bed and brushing her tangled hair. She witnesses the mundanity of domestic life on the weekend , when we can spend time together, as I work full-time the week nights are pretty much, homework, bath, bed. However she recently asked if we could go away to a hotel, just her and me. I have no idea where the thought came from but it sounded like a great plan, a mini break for us both. Away from the distractions of boring home life.

I needed somewhere close by so the drive didn’t exhaust me, also as I won’t drive when I have taken my painkillers so I was limited distance wise. I was originally quite taken with the Cotswolds, about an hour and half from our home. Cute little villages, just right for a stroll,  a place that did good food so we didn’t have to fend for ourselves but as my online search continued I came across the The Great House at Sonning in Berkshire and the plan changed. It was perfect, on the river, beautiful looking rooms, lovely restaurant menu, a bar with loads of sofas for pre dinner cocktails and a luscious looking deck chair strewn lawn leading down to the river. I managed to nab the last room on the Saturday night I wanted and opted for the more expensive river view room (£180) as a treat for us. It is also worth noting that at the moment there is no two night minimum stay at the weekend which makes it a much more affordable option for a jaunt away. I also requested that a bouquet of flowers be left in the room for Lulu as it was our first mini break together and I wanted to spoil her, the lady on the end of the phone was incredibly helpful and indeed the bouquet from Sonning Flowers (£30) that we arrived to was perfect for a 6-year-old girl. I booked dinner for the evening and breakfast the next morning, having discussed my Coeliacs disease requirements (gluten free food). The lady I spoke with was completely unfazed by my food requirements and that is always a good sign, much better than the ‘you’re what?’. An immediate anxiety attack follows that comment.

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Lu was particularly taken the picture of the stag, there were more lining the hallways

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Bathroom of dreams…those tile though

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My favourite part of a hotel room? the air conditioning or fan

I dropped the mini sausage dog off with my partner, dogs are allowed – woohoo – but I wanted to give Lulu my undivided attention, and he gave us a lift to the hotel as I was flagging a bit. We arrived for check it at about 3.30pm, the weather was picture perfect, sunny and blue skies. Check in was painless and we took our bags up to our room which was just as lovely as the website photos and the best bit? A fan in the room. Lu was thrilled, a massive bed, the big tv, a lovely spinning desk chair, a shiny bathroom with a shower so big that lu could lie on the bottom and present to swim. There were also jars of sweets, biscuits and fresh milk in the fridge.

Lu is as impatient as I am and after admiring the room and opening the windows off we went to explore the bar. At this point I must say that out room was over what turned out to be the resultant and outside dining terrace so there wasn’t much of a river view, save a sliver in the distance if you stood up tall, and the noise of the customers kept me awake during the night as it was so hot I kept the windows open, however I was so disturbed that eventually I relented and closed them. I did mention this to reception when I checked out so do be mindful where your room is. The other half of the building over looked a second beautiful lawn leading down to the river that is used for private functions though you may run the risk of being kept awake by the tradition wedding disco.

 

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I had the very same ballet bag when I was little

The bar and restaurant is called the Coppa Club and seems to manage to be all thing to all men very well. A lovely chrome bar with stools and an amazing cocktail and wine list. Comfy sofas for lounging and there are beautiful old paper backs scattered around for you to browse. As Lu and I sat at the bar drinking lemonade and drawing in her colouring book the rest of the bar consisted of ladies lunching, people working on laptops, families and couples drinking Pimms. Lu decided we needed to move to the beautiful velvet sofas and I took the opportunity to confirm our dinner booking and my gluten free status. After a while we ventured out onto the lawn with our drinks and relaxed in the deck chairs, listening to the music playing at just the right volume for me, people watching and admiring all the dogs in attendance. There was a bar outside which  had a BBQ going should you be minded. Lu was not a fan of the deck chairs and made us move twice. I add that the place was packed, we were lucky to get seats. There was also a wedding reception taking place on the next lawn, the bride was having photos taken by the river and she looked gorgeous. Lu loves a bride, I think she is quite taken with the ‘princess’ concept. So we admired her for a while and then decided to get dinner early. The restaurant staff were utterly charming. We were seated by the open doors to the terrace with was perfect as it was still so warm. Our waitress talked me though the menu and Lu got her own menu. We both opted for streak and chips. I had a crab linguine to start, Lu went off kids menu and had broad bean and feta humus – not a hit with her. However our mains more than made up for it, they were absolutely delicious. Mine came with huge grilled mushrooms and Lu and I cleared our plates. She drank a coke, which she had been looking forward to since I had made the booking, such treat for her (mean mummy) and I had a Seedlip and Fentimans tonic. Seedlip is a delicious non alcoholic spirit, a bit like gin. It was delicious, icy cold and refreshing. A fantastic substitute for alcohol, I gave up drinking over 3 years ago, but there is only so may elderflower presses that a gal can drink.

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Outstanding food and such good prices

Pudding for Lu was ice cream and for me a butterscotch pot with salted caramel. It was sensational, Lu and I were literally fighting over the empty shot glass it had come in. I shall be asking for the recipe. Then Lu wanted a cuddle so clearly it was time to go to bed. We had a fabulous shower, with the most enormous rain shower head I have ever seen. Then into bed to watch Over the Hedge on the iPad.

After a less than restful sleep – see note above about room location – but  superbly comfortable bed we awoke to the horrible news about the Tower Bridge and Borough Market attacks. I made a few phone calls to ensure that everyone I knew in the area was ok and since it was plastered across the TV and had the great pleasure of explaining to Lu, in language that will not terrify a six-year-old, that again, after the Manchester Area ‘fire’ some people have done some very bad things and some people had been hurt. We then called nanny, who live in Greenwich to make sure she was ok and for Lu to tell her all about the incident.

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Breakfast on the terrace, we felt so sophisticated

The sun was blazing so we had breakfast on the terrace. There was no porridge which Lu had been looking forward to – though she never eats it at home – so being my child she ordered a plate of bacon and a fresh strawberry cocktail. I had a salad of watermelon with yoghurt, lime and coconut which was fantastic, and of course – coffee. The terrace was extremely comfortable, cushions, throws, anything you could want. We had let time get way from us while we were watching the news and so packed up quickly after breakfast and lazed around on the lawn again, this time on bench which Lu much preferred and waited until we were collected and whisked off of a lovely family lunch.

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Lu dressed as Dorothy. She loves a dress up outfit

The other slight disappointment, apart from the noisy room, was that the hotels website picture gallery showed children river swimming and Lu and I were rather excited by this, we even brought our swim suits. However, when I asked at reception they said they hadn’t heard of anyone swimming in the river, I had to bring up their website on my phone to show then the photos but still nothing.

 

As a complete aside, and by a very strange coincidence, I have actually been to that hotel twice before when it was in its old form, both times with my ex husband, for a huge family birthday party and then for a family wake. It had not occurred to me it was the same place until we turned not the car park, small world huh?

The Great House underwent a huge refurbishment last year and looks nothing like it did.

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One of the many cute dogs we encountered

Lulu and I had a wonderful time, all the staff were simply delightful and made us feel so welcome, we even go smiles and waves as we left the car park. I would go back and stay in a heartbeat. I am very envious of the locals, they get to pop in whoever they want. However, it does seem to be a great place to hold a wedding……

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