Shopping List.

Well I have a head filled with ideas and part thought out posts yet I just can not think where to start. My mind is swimming in a jumble of words and feelings and so I must stop.

Aha I know what to do, this title says it all, I set myself this writing exercise, clear my mind, think of nothing and note down a shopping list, thinking only of what we need around the house, simple! make the list, then comment on the list and no more.

Foil: I’ve been out of foil since Xmas, its been on my list but escaped me each time. Oh well when do I even use it? Recently I had yo use cling film instead is that so bad? Though foil I can recycle if its clean unlike cling wrap. Remember to get some, you never know when you might need to make a foil helmet to protect yourself from wavelengths, or stick it to windows to keep light out like a Vampire on the run.

Butter: I like Lurpak, spreadable, but have you seen the price now? I had started to treat myself to the real stuff but am now back to the unbranded tubs, Aldi’s seem to be the best alternative, but most supermarket varieties are fine. How much does it matter really? I know people who swear by their original butter and won’t be swayed, even a lover of Anchor, to my horror, yellow butter Nooo!

Tissues: We always keep a box of tissues on the coffee table, they come in handy, especially as we are prone to viral illnesses, the dog loves shredding them to pieces too.

Dogfood: Our two mutts are picky eaters, mostly I feed them with home made meals, suitable leftovers or meat I have neglected to cook by the sell by time, mixed with carbs and veg. I buy a variety of actual dog foods as and when I see them on offer generally, they won’t eat any meal more than 3 meals in a row, honestly, I say eat it or don’t, they don’t.

Milk: Currently I am on Almond milk, while my daughter favours oat, I grab the cheapest possible, Lidl is my favourite place for these just now. Have you seen the prices of milks? Yes, so its a Cost of Living crisis, what do I expect? Well I don’t expect every product I buy to have increased in price up to fifty percent, while supermarkets are making record profits! I am very deliberately buying less and back to very careful shopping practices.

That’s all I can think of just now, seems I have ignored my own advice of keeping a list handy n adding to and taking out to shops with me, Yes I know this is the sensible way, however mostly I forget, either to write it down in the first place or to take it with me. See how I am waffling about nothing already.

Now to comment on my items!

Well Chris, what a boring waffle this has been, a shopping list? Whatever next an essay on toilet roll, don’t tempt me. It has done as I hoped and got me out of my head and onto the page, here’s to more interesting posts to follow.

Chris.xx

Tect tecy Text.

Today I am inspired to write about Texting, it is becoming the bain of my life and I feel old. When I send text messages I have to rewrite and change most of the words and often I takes several attempts to get right. It’s a combination of my eyes and fingers, I aim for a letter but get the one next to it.

Here’s an example I typed out earlier.

Helli thete! Hoe ate you? Good to hdaf crom you.

The sun is shinninh hete, bows it whrte you Re?

Spring is on its eay, soon be here yey! Take goid care of yourdelf.

See yoy soon.xccc

It looks like a new language and although you can just about get the gist of it I couldn’t possibly send it like that. So I fiddle and change and correct it, making this simple form of communication very irritating, frustrating and tiring and so I avoid it as much as possible.

When texting first began, words were simplified into a new simplified language, at the time I was such a word snob that I saw it as the decline of language, although I soon took it on as back then messages were restrictive to a number of words and payment was by each individual message so you soon wanted to cut down and get as much into a message as possible.

Then came the smart phone, with unlimited deals and plenty of space and so we all returned to English as it should be, except for a few chosen abbreviations. My keypad typing is not much better but at least I have spell check to help me along. Humour me I just had to let this out. Moan moan, I am nearly 50 and old.

Erll thats it fof noe!

Chris.xx

Doctor, Doctor.

Give me the news.

So today I went back to see the same, new to me, G.P. I saw previously, she of the optimistic testing. Turns out I don’t hate her, she seems nice and very thorough, see I am less cynical and on the brighter side of life.

I am starting HRT! Yey! It seems like such an occasion, a milestone, I am finally a grown up woman! None of the old crone, dried up prune, older woman for me, I will moan and grump a little less as I embrace the magic of the therapy. I do not begrudge the loss of my fertile self, I’ve been through with reproduction ideas for too long and periods, well fuck me who needs them!

Blood tests revealed I am a little low in iron and vitamin D, well that doesn’t surprise me, its winter and I haven’t been eating much( why am I getting fatter?). I am to take some supplements, well ok then, I am a believer in getting vitamins and nutrients naturally and don’t really believe anymore in supplements, as they are unregulated and can be misleading, but hell I won’t say no.

On the whole this was a positive appointment, I am feeling optimistic and feel I have been listened to and helped by this G.P, way to change my mind, I don’t have hope in rheumatology referral or the pain clinic, but at least she did something.

So here’s to HRT, lets see if it is helpful?

I will keep you informed.

Chris.x

Where have I been?

It feels like forever since I sat down to this blog, I think it has been a long time, I am definitely out of the habit of writing. Gone is the routine of last year when I produced a blog and a waffle most weeks.

Where have I been? I have no idea. No where nice that’s for sure. All things physical became too much and all things family fell apart.

Enough of the wallowing, think forward not back, I tell myself.

So from here, hopefully things will improve, it may take a little time to build back into a rhythm but I am ready to try.

So stay posted, new posts being created in my head as I type and will soon appear!

Chris. x

Bloody Blood Tests.

Welcome to my weekly waffle, the place where I can let go and truly vent and moan on. My topic today links to my most recent post, New Year, New G.P.

Out of the numerous tests this G.P requested, what did she find? Well as I said I am not diabetic and as to the others? What? Well nothing, of course nothing, well that’s not entirely true, I had slightly low iron, she wants me to have more tests for vitamins. What a waste of time, just as I thought.

The blood clinic is miles away and not on an easy bus route, so quite a pain to get up there, you can no longer just walk in and have to make an appointment which is a total pain also. I had to pay for a taxi there but stupidly I took my chances for a bus to return, I must not do that again, 40 minutes standing in the freezing cold was not a good idea.

After all that effort, there is nothing to show for it. I got my results from the doctor within 2 days and in text message, all very efficient and again pointless. I must have another test and then book a follow up appointment, woohoo!

Here’s to the next test.

Chris.x

I can’t talk about it.

I am sitting here in the lovely warm library, thinking of things to write. I have a list of topics with pieces half written in my head and yet I just can’t do it. I reread my last post and cried, quietly.

I have lost my positivity, my determination and clarity. I want to cry and curl up with the dogs. I slept through yesterday and woke today feeling refreshed, I made progress on the state of the house, completing several small chores, I finally got all the Xmas stuff into the cupboard, I daren’t open it again as it will all leap out, but that door is shut , for now. I even made dinner, ready for later.

I got here, intent and inspired, I thought. I have enough time before my relaxing stretch class and cardio dance session but I am just sitting here. I don’t know where to start or what to say? All the pieces I have planned seem negative, I want to write something witty and amusing, but I can’t. Nothing I think is light or nice. The truth just seems endlessly dark.

Okay so just reading this, I probably did too much earlier, time to reel my thoughts in and just be at peace with myself, accept that for now I just can’t talk, can’t put the words outside of myself and know that’s okay.

I am feeling week and emotionally vulnerable and so must focus on the things that cheer me, writing this blog, usually makes me very happy, just not today. I will go over to the gym and stretch and dance and hope that will do the trick. I will loose myself in the music and feel myself move, if I can’t do it I will sit out and listen and watch and know I am trying to live.

So, for now I can’t talk, but I will again in time.

New Year: New G.P

So you may already Know I have been struggling recently, my pain levels have gone off the chart and I just haven’t been able to reboot and regain any modicum of control. When I think of it now, I realise I need a huge hug and praise for being awake and active at all during winter months; this is not always the case, even now I know the answer lies in lying still, I just don’t want to. I want a life!! I demand a life!! I am beyond sick of all of this!!!

Well wanting and having are to different things. in this mode I am most likely to push and push and push myself physically until the point of total collapse. I will punish myself by ignoring my symptoms and pushing through the pain again and again.

I must not do this! I know this feeling and where it leads, self destruction is not a viable option.

I make another appointment with a G.P, prepared this time to beg for and accept new pain relief options. At my last appointment with a student doctor, he said morphine was the next step and I was scared. Since then I have thought about it and feel ready to try, I know people with morphine patches and hear they work, giving a constant relief rather than the up and down of Tramadol. He also mentioned another possible drug, but for now advised I take tramadol at night also. I am most struggling in the night, with pain keeping me awake so agreed to this. I am not a drug monster, I am careful with my drug use and do everything to avoid dependency, yet I can not function without it.

Now I accept defeat and give into the pills, I will take anything just to make it stop, just for a while, just long enough to take the constant fear away, its a vicious cycle, it hurts, I know certain movements make it hurt more, so I start to fear the movement to the point I fear all movement and have to stop, becoming a bed ridden mess.

So New Year, New Me mantra, I will take back control, I will get through this, I will have some semblance of a life, I don’t have grand plans, I want to dance and write in a solid but manageable routine, its not much to ask.

So back to the G.P.

This one is a new one to me, she is keen and doesn’t believe in pain relief. Fuck! I seem like an addict begging for more. She proves she is diligent and dedicated and starts with me as though starting from the beginning, asking about diagnosis and other exploratory tests, damn it, I don’t care about all that, I’ve believed in tests, had tests and tests and tests, I want pain relief please! I hate her! She asks all the right questions and listens and I know she is doing the right thing, but I’ve been here before and I just don’t have the strength for it. I sink into myself and agree to it all, first the bloods, I see from the request form after that she suspects diabetes, been there, don’t have that. There is also a hormones levels check and bone and calcium and something rheumatic, lots to check. She wants x-rays of my hands and a referral to rheumatology, and a pain clinic. Any other time I would have been grateful but this time I feel shattered, as in literally blown apart. I needed this pain to stop now, NOW!

I hint at my desperation but feel judged; she knows I am a mother that my child suffers also and so I can’t tell the truth, If I cry she will assume I am depressed so I mustn’t.

She asks about hormones, I happily tell her my periods are slowing, something more for her to grasp at, would I take HRT? I tell her I will take anything, anything, please, anything. Instead I leave with investigations to wait for and nothing to help, nothing! There is nothing to help, nothing but me and my self and my stamina and strength of mind and me. It all starts with me, there is no white Knight to rescue me, no magic cure, no cure at all, no one to soothe me or support me or comfort me, just me. I will rail against the unfairness the absurdity if it all, then I will set my mind straight take a deep nasal breathe and begin again.

Wish me luck,

Chris x

CFS v Fibro

Back at the time of my half-hearted diagnosis in 2000, Chronic Fatigue Syndrome and Fibromyalgia were viewed as two similar yet separate conditions. I remember reading all about Fibro to see if I had that or CFS. It was clear that I had all the symptoms of it but also all the viral symptoms that were part of CFS, so yes all of those symptoms and more. That’s how I saw it.

From my research I saw that Fibromyalgia was very much more focused on the joints and bones and associated pain whereas CFS covered this and had a wider spectrum of vague symptoms of exhaustion and flulike, viral symptoms. It was easy for me to make the distinction between the two. I remember explaining the difference to a friend I had made whose sister suffers with Fibro, in fact she herself went on to also be diagnosed with Fibro and with arthritic conditions also, which as an identical twin seemed inevitable.

Years later I met someone who told me she had CFS and Fibro, I was most curious about this and when she asserted her diagnosis as both I went directly to my G.P to question my own diagnosis and Fibromyalgia was added to my condition list. It seems times have changed and both conditions are seen as lying alongside each other.

There seems to have been an uptake in people in my area being diagnosed with Fibro and I put this down to a new Fibro aware consultant. There is something about the term Fibromyalgia that commands more respect and understanding as an illness. People seem to think of it as a serious condition, unlike CFS which has been most maligned throughout history. I put it down to the word ‘fatigue’, this word leads people to assume, ‘tiredness’ which seems vague and elusive, while Fibromyalgia seems solid, the Latin gives it a credibility and authority.

Its funny to me, when I was diagnosed I clung to the American term CFS over the British M.E, somehow it sounded more assertive, especially when just spoken as letters. M.E had been referred to as the ‘Yuppie Flu’ here during the eighties and the stigma never seemed to wear off. People thought of M.E as something in the head, a mental incapacity rather than physical. I eagerly ditched the British term and embraced CFS. The title Myalgic Encephalomyelitis, sounds very grand and stern but it was broadly thought that this description was incorrect, basically meaning pain and swelling on the brain, contemporary theory denigrates this description. and maybe the brain reference is what mislead to the phycological. Strangely, now though the younger generation seem to have spurned the term, CFS in favour of the older M.E. I now refer to either and both which ever seems more suitable at the time.

So can people diagnosed with Fibro also have CFS, well yes if they experience the viral symptoms with indistinct throats, swelling glands, flu and all the rest. I think now the two are inexorably linked.

So if you currently have one, look into the other in some detail, before you satisfy yourself with diagnosis. Scrap the notion of either/or and claim both if the cap fits.

Horrible Hormones.

And so I come to the subject of hormones, as a woman hormones have been a powerful part of my life. Now at the age of 49 I find my periods finally subsiding, with an inward cheer I await the cessation of this bloody mess that has so dictated to me.

Hormonal imbalance is another symptom of this lurgy, but how to explain it? And to you men out there, apologies, I know nothing of the male experience.

So let me begin with my own experiences; from the age of 11, I was plagued by heavy, tortuous periods that left me wiped out for days, my mother embarrassingly would write notes for school, ‘Chris, was absent from school today due to a heavy period.’ ‘Heavy period’ just didn’t cover it. Since my late teenage years I was cursed with two periods each month and spent my life trying to escape these. I took all that was on offer from numerous doctors, to block them, or lighten them or prevent the pain all to little avail. My body knew its cycle and kept to it. A doctor once stated my ovaries were each releasing at different times, which I guess makes sense. After childbirth I was sent for scans and it was revealed to me that I had ovarian cysts, Polycystic Ovary Syndrome, in fact. I went on much later to have these removed, supposedly, I was told simply, following this procedure, that ‘no follow up is needed’ which didn’t explain to me, which path they had taken, out of the two options, Remove cysts, or remove ovary? The report to my G.P. mentioned, removing the tube, with no mention of ovary and I still feel it pinging away every period so assume it still there. Anyway surgery brought no improvement and took two years for my body to recover.

The Mirena coil was heralded as my best option and I spent years with these things inside of me, only to discover, thanks to lock down, I have a reaction to these. I had been struggling for years with painful bloating and weight gain around the middle, despite diet and exercise. When my coil was left in past its life date due to the pandemic, weight dropped off me (despite no gym) and the bloating ceased. When a new one went in, my body changed within a month, back to hard bloated stomach and the side effects were obvious. I had it out and have managed without any treatment since then.

Mood swings are my least favourite symptom, the sudden burning hot tears dropping down my face for no reason. The feeling that I might roar like a lion, out loud. Period symptoms on top of my normal, wipe me out and I can not wait for them to end.

Then there’s the blood, literally the buckets and waterfalls, oceans of blood to deal with. No sanitary product can cope with the sheer volume, I remember when Super Plus tampons were finally created. Now I use a moon cup, with towels for extra protection, these have become my favourite option as I can empty as often as needed, they are not for the squeamish but better for our environment and a marvel actually.

Not forgetting, the body hair, facial mainly, my light fur becomes thick, black and coarse, like spiders legs sprouting in patches, I am not yet sure if I would grow a full beard if left but it feels that way. I live surrounded by tweezers, every time I feel the brush of a hair I reach for a pair and don’t put down until I have it out. I use an epilator too, most visits to the bathroom, I can be heard buzzing and blitzing my chin and neck. Every so often I find a long curling one weaving out from under my breast, these ones are most satisfying to remove, once you’re over the horror of it being there. Hair removal is a constant effort, I am a face gardener.

I am sure I have been peri menopausal for the last decade and am naively wishing myself into full menopause, knowing that I want HRT, yes please. Menopause symptoms sound hideous and seemingly can mess up a woman’s life, yet I wonder if I will even notice them under my usual symptoms, maybe I will get lucky? Either way I see what happens, soon I hope.

Ever hopeful,

Chris. x

When will I see my table again?

This is the song in my head each time I enter the kitchen. most often it seems more like an act of faith that the table exists under the piles of clean washing and a detritus of other items. How did this happen I ponder? The problem is we have limited space, yes it’s a small house and our belongings now outweigh the space we have. It would be lovely to think I can just put away the washing, but its not that simple. Where will I put it all? It will just create a pile in the bedrooms, so instead I organise it all in the kitchen and hope that the pile subsides before a new wash load is added.

Pacing, lets talk about that, according to pacing practice I should have a pile of washing or a basket of it, waiting to organise and put away, so in one way I am doing the right thing, and so there. Okay so in time the next action should be taken, it’s just that I have cut out all the further actions, in some ways it saves time, it all comes back to the kitchen and the table anyway so stop wasting time with the in between actions. I can say I am deliberately cutting corners to save energy and make life easier, I can and I do say that, but still I feel like a slob and harbour secret tidy person thoughts that I would like to see my table clear.

At Christmas I took the plunge and cleared it all, making it all presentably Christmassy and yet already there are new piles accumulated and some new washing, waiting, staring at me ominously. It won’t take much to clear it again but then what? Will a dreamed of laundry room suddenly appear, with ceiling hanging drying frame? A beautiful utility room with Belfast sink? Will a cloak room spring forth, with room for muddy boots and winter coats, well yes all of that but only in my imagination.

With none of that real, I shove all I can into cupboards, with doors that can not squash shut, bag up bits and hide them wherever I can, throw things into the garden shed, with the promise of someday, arranging it all in there. I hide things in plain sight, making an interior design challenge statement and mostly I walk past it all steadfastly ignoring it all, with a physical shudder that warns….. Do not look under the table!

Stay tidy,

Chris.xx