January 24, 2024
The good balances the bad. Apparently
I was dreading January 21st this year. And the horrid thing about this date is no-one knew it was a tricky one for me and I couldn’t talk about it either.
Last year, on January 21st I learnt that my husband, everyone’s favourite boy wonder, had lied to me spectacularly. And I found out via a piece of post which is not ideal. It was a truly awful day and of course, it being a Saturday last year, he wasn’t even home to see the breakdown. Instead, as his sister was coming for tea that night and I was in the beginnings of an awful UTI, I kept it to myself for 36 hours.
I do not advise mixing a UTI with the end of your world.
Things were not resolved last year and neither have they been resolved since. So the anniversary of the date was a painful reminder of what a pathetic case I am, that I can be treated in such a way and yet still hang around without wanting better or insisting on a change. I did try and discuss things, I did try and explain how I felt, how I wanted different and all that. He made promises, I set a deadline in my brain and of course, nothing changed, nothing got sorted and instead, I sent a text to someone which seven months later was screenshotted and sent to the vicar who removed my authorisation to ALM. No context, no explanation, no warning.
So January 21st is a bad date for me. It holds so any negative memories and thoughts of how things could have been different ‘if only’. I don’t want to live in the past but these dates and lack of change make me wonder if I deserve a bit better? Or should I just put up and shut up?
This year, the 21st saw the arrival of my four rescue chickens which were a christmas gift, they are called Trifle, Pav(lova), Cupid and Vixen. Proper festive names. We also went out for a meal with his family to celebrate his Mum’s 80th birthday.
My good bit for this week was that I got to do a hibernation count of bats at my favourite site. The human I do this with is a joy to be around, always has the right thing to say, the best treats and chats afterwards. I am lucky to have them in my life.
The end of the month is only about 500 days away now, not that February ever seems shorter but we can hope! The snowdrops are looking magnificent in the gardens and the storms make for an excellent excuse to sit in front of the fire and read. It’s these simple things I need to dwell upon. The small, simple things that should have my brain and my gratitude.
September 22, 2021
I am a rubbish poorly person
Gah. I have had ENOUGH now.
This snot and gunk lurgy is just ANNOYING. I am fed up of coughing until I vomit. I am fed up of sneezing so much my ribs hurt. I am embarrassed that I’ve had to ask dear friends to source me vicks and super strong strepsils.
I really want to sleep without choking on icky stuff.
I dont know what this bug is, I don’t think I care whether it has a name or not, I just want it over. I want to breathe and move and be able to do anything without feeling beaten up.
And yes, through it all, I am trying to stick with my diet. Which was fine until today when I decided to try new products. The porridge was pointless and had no substance to it and I wonder how much worse it would have been if I hadn’t added some blueberries to it. Then a bit later on, I thought I’d try a soup. Ugh. I added extra veg to it but 200ml of soup is basically a thimble full.
I
AM
SO
GRUMPY.
If nothing else I have learnt that the shakes work for me but these other things just don’t fill me up the same. Which is fine in the grand scheme of things and I’m sure I’ll be grateful eventually but right now, tonight, I’m fed up.
I want ice cream and chocolate and toast and crisps and cheese.
I know this will pass. I am already looking forward to my cherries and berries shake for breakfast as it is one of my faves. But unless I can sleep for the next 12 hours starting immediately then I’d better stick an ’approach with caution’ sign up on the door for hubby.
If you catch this September bug please give up any diet plans at the same time. Eat the toast and ice cream. Life is too short for being as miserable as me right now.
February 25, 2021
Tell me why … I don’t like Tuesdays
Tuesday 16th was pancake day, also the day of a telephone appointment with Dr Silva, the neuro psychiatrist from the Barberry Centre in Birmingham.
He was lovely. We had nearly 90 minutes on the phone together and it was reassuring and helpful. He agrees I need to see the specialist headache peeps that the professor referred me to last January. Alas, he cannot do a second referral as there is already one in the system for me. But he feels this would absolutely be the best place to help me and he agrees with the Prof that I need Botox to help with the migraines and the TMJ issues. He has hinted I need to lose weight which is brave of him during hot cross bun season but it’s fair enough. Only being 5ft is a pain when calculating BMI. Anyway, he can’t speed up the headache peeps but said we could contact them and find out where I am in the waiting list queue. He’s also asked for some bloodwork results and stuff so that might generate more dramas with doctors and rheumatology as he wasn’t impressed with the info from them. Progress. Frustrating that he can’t wave a magic wand or generate a new prescription but still progress
Unfortunately, there was nothing immediate he could do about the headaches right now. He agrees I can’t carry on as I am but he’d rather I not go back on the meds that the Prof asked me to come off even though they worked for me. This is the bit I’m struggling with. I’m so fed up of the piles and piles of paracetamol and migraine pills and I know I have to be patient and wait for the headache clinic but even if I get a letter tomorrow, the appointment probably wouldn’t be for another 6+ weeks.
But, let’s be positive. I had an appointment – it was not cancelled. I have a plan even if that is only to wait. He hasn’t dumped me, he still is going to work on my file.
Tuesday 23rd was the day of my colposcopy. Be warned, I might get carried away with the descriptions due to my lack of filter. However, you know me well enough by now and this blog was set up to share medical news and updates because I haven’t the energy to talk to everyone individually or write emails to all my fans. This is the place to explain what happened and how I feel and what happens next after all.
Redditch hospital was like a ghost town, it was so odd. And I was stressed out beyond all normal limits. It didn’t help that everywhere we went – the entrance doors, the ward reception, the actual appointment room – they all kept trying to get rid of hubby which wasn’t ideal. I could never have navigated the corridors on my own or remembered all the instructions and info they gave us. Thankfully, they let him in and we just got him to leave when it came to the messy bit.
And it was indeed, messy.
I’d worn my favourite pair of knee high rainbow socks – always good to have a positive talking point to start with. I learnt that during the last round of colposcopies – always wear your bestest, brightest, cleanest socks. Novelty ones that make tunes are A* socks in these situations.
So I’m in this contraption with my fabulous socks and zero dignity and accompanied by three nurses. One at the business end, one in charge of instruments and another in charge of me. She seemed to spend most of the time telling me to breath and to try and relax …….. Bless her.
They were everso, everso lovely. They knew I’d been through the system before so knew why I was stressed. They kept talking the whole time about what was going on and why and the main lass would tell me what she could see and what it told her. Basically yes, I have more abnormal cells and the bits that were chopped out will be sent for biopsy. She says the abnormal area this time isn’t as extensive as before based on the area of scar tissue but it is either side (top and bottom) of this scarring from the loop excision. The weirdest bit was when she had to clean up the excess liquids – having a cotton wool ball wiped around your insides on the end of foot long plastic pliers is a super odd sensation.
She can’t tell me what will happen next. It all comes down to what the biopsy results are. What doesn’t help is the fact I have a twisted cervix and the main bit of abnormal ness is at the bottom and very, very difficult to get to without me shouting and being very uncomfortable. So it may be that I have to return for another colposcopy with a gynae doctor rather than a specialist colposcopy nurse. Or it may be that they just send me straight for treatment – last time I went to Kidderminster for this. Or they may say I can have some time off but instead of a standard smear in December, I’ll have to have a colposcopy again so they can really get in there and check all over and have a good rummage.
Tuesday night I couldn’t move. I could hardly walk. The discomfort was intense and I remembered how bad my period pains used to be when I was doubled up over a hot water bottle for days each month. So I was basically put to bed on Tuesday with mugs of tea and a hot water bottle and Albie came and looked after me which was amazingly lovely as whilst he likes my bed, he doesn’t like my bed when I’m trying to also be in it.
Wednesday, all the stuff started coming out. I was warned about this – well, I was warned it would be a mustard colour – but I wasn’t warned about the quantity that it seems to be! I guess lube and vinegar and iodine and blood and clotting paste makes a bizarre mixture at the best of times? Ugh. Wednesday I still couldn’t sit properly. I was trying to explain to hubby what was going on and the closest I could come up with was your delicate bits being repeatedly stung with fresh and angry stinging nettles. So I have perfected the art of lounging like some Victorian delicate lady. I did move from bed to sofa and for most of the day Diesel was my cat guard whilst Albie kept my bed warm for me.
Today is Thursday. I’m still sore but I’m dressed and more vertical than the last few days. The paracetamol has gotten the cramps under control and whilst I’m still on the hot water bottles, I’m reasonably sure this isn’t a habit to be worried about. The sun is shining and it is a beautiful spring day. I have crocus flowers in all their purple gloriousness and the bulbs are pushing through the soil. Life goes on, there is always a positive in nature.
In other news, I’m hopefully getting my covid jab soon. I’m group six and the doctors are starting to call peeps. I’ve heard from some trusted friends that this might be another rollercoaster for me as there are varying side effects from a blazing headache to full on flu sensations. What fun eh! Maybe I’ll try a daily blog with hour by hour updates for y’all
January 6, 2021
Seeing the professor – one year on.
This time last year, I wrote at how I’d seen the amazing Prof Sturman at the QE in Birmingham. Hopefully I’ve managed to insert my first ever hyper-link if I haven’t, just copy-paste please!
I saw the neurologist.
I was left feeling really positive, really grateful that this man was going to refer me to all these places to help me.
Of course, the year that was 2020 had other ideas!
My appointment to max-fax was set up then cancelled.
My appointment with the migraine clinic was set up then cancelled.
My appointment with neurology follow up in August was set up and changed and then cancelled.
My appointment with rheumatology was by telephone and he told me to do couch to 5k and then I wouldn’t be in pain anymore. Then he told my GP and the Prof that I had carpal tunnel.
I’m not totally daft, I know the Prof wouldn’t have ‘cured’ me but I know he would have improved my quality of life. These headaches could really do one quite frankly and I’d just like to feel a splash more human on a more frequent basis. I’ve had a letter for a telephone consultation in February with the neuroclinic so we’ll see what comes from that. They’ve sent me a scoring questionnaire to fill in before the appt so that’s something fun to look forward to.
And we are in another lockdown – not that you’d know it by driving through town! Annoyingly, I was due to have appointments for a haircut, waxing and nice nails this week and they’re all cancelled. I currently look like a swamp-person version of cousin it from Addams Family. Husband says I can’t work from home due to a lack of computer-ma-bobs and therefore I have to get dressed and leave the house to the office. I haven’t met clients since March 16th last year anyway so I guess I’m back on iplayer pretending to write something educated. Currently listening to Keith Urban’s new album if you’re interested. Eventually he’ll run out of tedious tasks for me and he’ll want a day playing with his cars so I’ll get a pyjama day to make pom poms soon enough.
I’ve also been spending the time scheduling witty faceache posts for Evesham Bat Care so my time is not completely wasted.
The resolution plans for no spending are going okay ish. I had to buy a mug the other day for my EB obsession room. I have no regrets about that.
The dilemma I have now though is that I ordered and paid for something before Yule and I had a cancellation email and refund yesterday (or the day before) so I’m without that Very Essential Thing. Purple hair wax if you must know. So. Can I buy this as it was really a pre-Christmas purchase and I’m just replacing it or does the no shopping rule stand regardless? Oh, the questions!!!
I bet you’re all utterly exhausted reading about the exciting whirlwind that is my life eh?!
The day that is 6th January is full of history for me though.
2020 was the day I saw Professor Sturman again after seven years
2018 was day one post-op when I had my scar removal treatment with the lovely Dr Milne.
2017 was the day that Pirate Cat died. My bestest cat-guard of the duvet palace.
2010 we had about 9 inches of snow and everything look utterly fabulous and I got the day off work
And 2021? Well, last night at 21.11 I had my first bat-care call out!
October 4, 2020
Ten minutes on a new habit.
I’m getting ahead of myself in anticipation of November 13th. Okay so it’s going to be a Friday and we all know that Friday 13th is supposed to be unlucky BUT this year, it is also World Kindness Day.
For my efforts on WKD I’m going to send notes to people to remind them how awesome they are and how grateful I am to have them around. I’ve found some quirky cards and postcards and I’m going to take ten minutes every weekend to add another one or two to the pile. Plus, it’s bonus bat stamps too!
You don’t have to plan for the next (almost) six weeks, you could do it the night before.
What I found during lockdown was that post through the letterbox, completely out the blue, was just so very special, so smile inducing, so utterly lovely. It is something I definitely want to continue – beyond lockdown, beyond World Kindness Day, beyond 2020.
Spread love, send bat stamps.
March 18, 2020
The start of social distancing.
It’s 3am and I’m not sleeping. I thought I’d beaten the weeks of insomnia but my brain won’t shut up today. I know what’s wrong, I know why it’s busy, why we are all worrying; this virus, covid-19
Monday afternoon I left work super excited about going to the theatre in Birmingham. Then as we ate tea, the news was on and the whole world turned turtle. The theatre after-care sales line was super busy, the evening was uncertain as the news continued. Eventually we had an email that the evening was cancelled.
We’ve been following the virus news for a while. We have gradually been buying a few extra bits each week – all plans to defrost the freezer over the Easter weekend have been scrapped! Our shopping habit was not unusual as we would often buy bits for the local food bank. I was very aware that if the virus reached the UK I’d have serious issues. When I went for my B12 booster I asked the nurse about it and she said it would absolutely kill me because of my ruined immune system and underlying health conditions. It was a harsh reality spoken out loud.
Monday night just underlined that. I was expecting to have to isolate at some point, I did think it would be a week later than it’s been! I wanted to get to the theatre at least. Alas, the country has been shut, no theatre, no cinema, no quiz nights at the pub, no meal out for Mother’s Day I guess.
Monday, I thought I’d have another week. Monday night everything was stopped. Tuesday the emails began, the venues closing, the events being cancelled, the answers to ticket refunds or exchanges being sent out. I’m sure we are all saddened by the progressing news. Hubby and I work together, it’s his family business, we’re self employed and all of a sudden clients are cancelling appointments and our future is unclear. So we decided that I’d only go into the office of an evening when other people aren’t there to minimize my chance of meeting anyone. We hope we will have enough work in the pipeline to keep us ticking over but as none of us know how long this virus will loiter, we don’t know the possible outcome. Tuesday I went in and it was curious how quiet it was and how productive I was without interruptions!
By the time Tuesday evening was over, everything in my diary for March – and most of April – has been crossed out.
I’ve often spoke of my wish to hermit in the past. Last year I challenged myself to not hermit, to go out with select people, to have solo theatre nights or evenings at a quiz with friends. I was forcing myself to be social and not hiding away. But now covid-19 is enforcing a new hermit situation. I have been advised to avoid strangers and crowds. To not go to supermarkets or banks where there will be other people. That my self care and protection is paramount.
I have a sign on the door asking people to leave parcels in the porch and not knock on the door. I have a request out that any visitors sanitize their hands on arrival. Hubby and I are super mindful of what we touch, who we are around, what surfaces might need cleaning more frequently.
My brain is not calm. I am already missing people and it’s only Wednesday early doors. So before writing this, I’ve made a list of fun tasks I can do during this time. For starters I’m going to write as many of the cards for the year as I can – especially as stamps are going up in price soon! Go out and buy a pack if you can afford to, be organised for the months to come. By taking my time, I can rest my hands and fingers between each one. Ice it up or wrap it in a wheat bag whichever is needed. It’s a positive thing to do, I can see the pile growing, I can feel cheerful about the positivity I’m creating. At this time of uncertainty, words are powerful and positive and much needed during this time of enforced social distancing. Send notes people, check in on your friends.
Later today, when hubby gets home, I want to spend time preparing the greenhouse. Tidy it up, sweep it out (he’ll do that bit) and then maybe on Thursday or over the weekend I can plan lashings of seeds. Vegetables and flowers, food for the body and food for the soul.
We’ve also written a list of jobs we could get done too if hubby has to stay home and we are both well. But it’s a crazy list of redecorating and fixing and building. Not a list I can manage on my own by any means!
I am very aware that it’s not just me that’s been affected by the spread of covid-19, I know I’m not unique. But this is my blog and I’m having a woe is me moment. I was working so hard at being sociable and putting stuff in the diary. Maybe I’ll learn how to use technology better, maybe I’ll master the art of making meringues. Maybe I’ll go slowly crazy through cabin fever, who knows. At the present moment in time I have a bat in care so focusing on him is useful, you can follow his adventures and antics on facebook – add Evesham Bat Care.
What are all you guys planning on getting done during this social distancing and isolation periods? Are you going to become a jigsaw ninja? Scrabble champion? Organised card writer? They’re all good ideas.
Share kind words, spread love somehow. Check in on your neighbours if you can. Empty and defrost the freezer if you really want a sense of achievement! Stay in touch with us isolating peeps, abandon packets of dark chocolate hob nobs on our doorstep 😉 shout when you’re feeling lonely, don’t hide away and feel sad. Somehow we shall get through this – together we can survive anything.
C x
July 17, 2019
July news and blues
Oh my gosh it’s been a month, it really has. The fact that it’s only day 18 of July as I type this seems a bit unbelievable – July has turned into the new January; never ending!
Some of you have been asking what’s happening since my repeat blood tests and now I have an answer for you – I have an appointment with rheumatology finally and am just waiting for a date for the nerve tests.
So that’s good right? Hmmm, you decide:
I’m not dissing the NHS here, no way. I totally understand that it’s under immense pressure and that this current government is raping and pillaging it to death and pushing towards an insurance based scheme where the rich benefit and the poor just die but this isn’t anywhere near a 16 week wait. This is a 25 week plus wait and I’m absolutely certain I’ll get a letter come Yule-time changing it again. I can’t get an earlier appointment, I know the system well enough now and I certainly can’t pay to go private, so joint management and painkillers it is for a bit longer yet.
Aside from the crazy dated appointment, this month has been carnage. I went temping for two weeks which is never the best thing to do when I’m a bit meh but I was asked and I said yes and I knew I couldn’t book any bat work for that time period. Good job I was earning a pile of money really because in these two weeks I’ve had to buy a new dishwasher, a new microphone for my most expensive possession; my anabat, £500+ on vets bills, a new ipad mini for a very generous loan of an EMTouch detector and a new mattress because of a post-op cat wee incident.
Oh. And hubby booked a holiday for next February whilst I was away.
Before you go thinking we’re loaded, believe you me, this is not the case! I had some money saved up and I did the bestest frugal shopping around that I could. We work hard and we don’t live extravagant lifestyles, we love a yellow sticker bargain and only replace something when it’s unable to be repaired or re-purposed any more. This holiday is a much needed positive thing to look forward to and whilst shocked when he told me, I’m quite pleased now that I have something warm and exotic to target vertical-ness in January when I’m normally quite horizontal and utterly rubbish if I’m honest.
So I’m now investigating noise cancelling headphones. I’ve read about them on ME forums and apparently they’re brilliant for travel. Obviously I want mine to be purple but this seems to triple the price from normal black ones so maybe I’ll just get himself to get the duck tape out that he uses on my crutches. If any of you have used noise cancelling headphones and have any comment to make, please shout as I’d appreciate feedback from non-strangers.
June 12, 2019
TMI update
I wondered about sharing this but I’ve decided I have to because if it happens again, I need peeps to understand and be able to ignore or help me, whichever suits.
Yesterday became a bit of a ‘perfect storm’ situation. I had to get up early for work, which is in fact, normal time for normal people and I’d had a tricky night with pain levels but not worse than the usual underlying levels really. Anyway, was at work for 9am to get a massive project finished and out and I thought we’d leave as soon as it was done but the afternoon rolled on and on and finally at 4.30pm I begged for us to leave – I’d gotten a lift in as I didn’t feel okay to drive in the morning. At this point, I’d already fallen asleep on my desk which I don’t recall ever having done before because that’s just rubbish.
Begged and pleaded to go home and then realised I had less than two hours to fix myself, make tea, eat it, clean the house and go out to a thing I’d organised which I was really looking forward to. I promptly fell asleep on the sofa, woke up on the verge of tears and in tonnes of pain. Hubby had cooked some chicken and woke me up to eat. We cut up my food to try and avoid disaster with a sharp object and as I’m sat down to eat, I’m struggling to feed myself: I could grip the fork but couldn’t get it to my mouth. I’d like to joke about how could I miss my mouth, the size of it and all that but it’s not funny. It was like I was running a marathon in treacle whilst wearing an old fashioned divers outfit. Eating shouldn’t be that difficult.
So I was having a go and hitting my face or not getting it to my mouth because my arms worn out or managing to move my face enough to catch my food and then the hand tremors started and so everything was going everywhere and it all just got too much. I just burst into tears. Proper hysterical ugly crying tears. Hubby was like ‘what’s wrong’ and I couldn’t talk, I was crying so hard and my brain couldn’t form the words either. Eventually I managed to get out ‘I don’t want you to have to feed me’ and he was shocked, partly because he hadn’t noticed there was a problem and partly because we’ve never had a situation before where that has ever been under consideration. He’ll cut up food for me, yes, but we’ve never crossed that line before.
Imagine the scene; it’s ten minutes before I’m supposed to be somewhere. I have no control over the tremors, I have food everywhere but in my stomach (the cats are loving it by the way) and I’m an absolute mess. Just a snivelling, pathetic mess.
In the end, hubby drove me to my thing and I put on a face and sat on my hands and no one was any the wiser. When I got home I was like ‘do we need to talk about this?’ But what could either of us say? It was bloody awful and possibly my rock bottom so far. There is no way anyone is going to ever feed me, I’d rather go hungry and survive on mugs of tea for the evening. I’m not having that. It’s bad enough the stuff I have to ask for help with at the moment anyway, feeding me is a line I’m not willing to cross. Shoving strawberries at my cake hole or sharing an ice cream doesn’t count as feeding me, anything that involved you being in control of my fork is not happening. I’m 39 years old, not 3.
But I have to face reality. Yesterday was not a tough day in the grand scale of things. Yes, it was a long working day and I had to think a fair bit but there was nothing physically to wear me out. There’s a bit of emotional stuff going on in my head about certain people not coming to my birthday party but that’s just me being a petulant toddler and being disappointed that people have better things to do than come visit me for a few hours but this isn’t overwhelming enough to flatten me.
I was tired, I’ll accept that; I was all out of batteries and I was running on empty. But my hand tremors haven’t been that bad for probably seven to eight years now. Something was going on yesterday that I can’t explain and it was scary and horrible and I don’t want it again.
Where do I go from here? What do I need to ask for help with next time? Do I just sit and wait and hope it passes? Yes, I will discuss it with my doctor when I see him about my bloods and x-ray adventures, he can’t help with the practical stuff though, can he?
I hated last night. I was scared. I honestly don’t know what to do.
viewfromthisdesk 