June 12, 2018

Finding the strength to say no.

Posted in Health stuff, June tagged , , , , , at 8:26 pm by viewfromthisdesk

It’s a tricky thing to write about but I know I need to. Today I’ve hurt and upset someone which makes me sad but I’m also hurt and a bit angry at their lack of understanding. So I’m going to write about it b’cs that will help me work through my feelings calmly.

Sunday is Father’s Day. Always going to be tricky. So the in-laws have suggested going out for a meal,which is fab. The downside is the place they want to go to is over half an hour away. And I’ve looked at the menu, it’s expensive. I have a mad few days leading up to Sunday and then Monday is my operation and I need to be not stressed out or more knackered over and above the norm. And the only table they can book is half four, so neither lunchtime nor teatime!

I tried to explain I couldn’t travel that far, nor was I comfortable about the prices. I clearly wasn’t very eloquent.

I don’t think I’ve ever said no to them on the grounds of health before. Yes I’ve missed stuff last minute b’cs of migraines or other stuff. I’ve missed events b’cs of diary clashes too. I’ve just never said no in advance. And that’s absolutely my fault. I’ve pushed myself to attend and smile and hide the truth about how I’m feeling. Once I kept my sunglasses on b’cs I felt awful but I didn’t say no.

I don’t ever want to say no to anyone. I want to feel wanted and invited, I equally need people to understand that sometimes things aren’t ideal and I pull out last minute. The illness hasn’t just popped up either, this has been me for eight years now, its not a new situation.

And saying no has been hard. It’s not what I want but I have no other option.

Or do I? Should I have just pulled my big girl pants on and said yes? Am I being selfish in a bad way?

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March 31, 2018

March update

Posted in March, Monthly update tagged , , , at 12:12 pm by viewfromthisdesk

I’m not sure if people are really interested in these end of month posts but hey ho, here is my March summary:

Theatre was supposed to be ‘The Duchess of Malfi’ but snow stopped that, hurumpf.  I saw live transmissions of Oscar Wilde ‘Lady Windermere’s Fan’ and then Julius Caeser. I also saw comedians Reginald D Hunter, Bill Bailey and Sarah Millican.

Cinema was ‘I, Tonya’.

Music was Dan Reed & Danny Vaughan from Tyketto which was an amazing evening. Also Marabooboo Allstars who are a local band I’ve seen before.

Films I watched were ‘Wonder Woman’, ‘Hampstead’, ‘Gifted’, ‘The Shack’, ‘Daddy’s Home 2’ and ‘Una’

I’d challenged myself to read new authors this month.  I started with ‘A Secret Garden’ Katie Fforde who isn’t new but her book had the borrower receipt in it which inspired finding those books that someone else had read. One of those was ‘The Marble Collector’ by Cecelia Ahern.  I also read ‘A Daughter’s Secret’ by Eleanor Moran which was my first new author, ‘The Quality of Silence’ by Rosamund Lupton, ‘A Country Escape’ by Katie Fforde, ‘The Affair’, ‘Goodbye Gift’ and ‘The Missing Husband’ by Amanda Brooke, ‘My Husband the Stranger’ by Rebecca Done, ‘The Fifth Letter’ by Nicola Moriarty, ‘The Dark Angel’ by Elly Griffiths, ‘The Mistress’s Revenge’ by Tamar Cohen, ‘Last Kiss Goodbye’ by Tasmina Perry, ‘A Half Forgotten Song’ by Katherine Webb, ‘Secret Lives’ by Diane Chamberlain, ‘The Next Best Thing’ by Jennifer Weiner, ‘See Me’ and ‘Two by Two’ by Nicholas Sparkes another new author although I’ve seen plenty of his films adaptations, ‘No Place to Hide’ by Susan Lewis and ‘Small Great Things’ by Jodi Picoult. Twenty books in one month.

Health wise, I was super disappointed when my injections were cancelled on March 2nd because of the wretched snow.  This was reschedualled for the 16th instead. Dr Milne was very impressed with the scar sites, he claimed he couldn’t see where he operated. So I had some more steroids injected, I bled everywhere and then complained all evening about how itchy and annoying my ears were. The scars and surrounding areas were purple and bruised and sore the days after but he doesn’t think he’ll need to see me again – I’m welcome to just make an appointment if I’m concerned. I’m hoping this is the end of it though.

I had a random text message from my doctors saying I needed to have an MMR injection.  Now, I’m sure I had this when I was about ten back when it was very new but they couldn’t find a record of it and because there’s a measles outbreak at the moment, it was better for me to potentially have the injection twice than to catch measles and die.  It was a very cheerful experience.

The headaches have eased still but I’m struggling to get decent sleep, I’m not falling asleep very  well and then getting short nights. I’m grumpy and miserable but don’t know what to do about it just yet other than persevere and wait for things to return to whatever normal is.

I also had to see a new dermatologist about another lump I’ve had for a while.  It was also a new hospital to visit on my hospitals in the surrounding areas bingo card.  Lovely doctor, clearly only just graduated medical school and not been beaten down by the system into a drink dependency existence yet.  He poked it, went ‘hmmm’ took a photo and said he’ll refer me to Orthopaedics instead. The waiting begins again. I’ve got an appointment for early May.

So in the space of a week I had the MMR injection, my ears injected and my new(ish) lump poked at.

On the day of my last ears appointment, I had my first bat care call. It was actually a good call in the end,the bat had escaped through the thumb hole of the shoebox and flown beautifully around the finders kitchen before I arrived so I just gave him a check over and relocated him into a convenient bat box on the table wall of the house. Out of three calls this month, at least one had a happy ending.

Reading this, I’m impressed with how much I’ve done. I know it’s an exceptional month and come May, it’ll be an empty diary aside from bat stuff. Keeping busy is good and I know I’ve read so much because I’m not sleeping well. I’m hoping that April is less books and more sleep for sure!

March 3, 2018

And snow stops play

Posted in March tagged , , , , , , , at 11:49 am by viewfromthisdesk

I was really looking forward to March, the beginning of the month had so much planned and it was exciting stuff.  But then it snowed and because we don’t get snow all that often, life stopped.

March 1st, Thursday. A normal day by any other standards and until then, this place in which I live hadn’t really seen any white stuff, it had been bitterly cold but no snow.  Thursday lunchtime it was kinda trying to snow and schools kicked all the ankle biters out at lunchtime and my boss decided he wanted to be somewhere else, so leaving at lunchtime was for us too.  I didn’t mind, I had PLANS for the evening.  Plans that I’ve been hoping and dreaming for all my life.  For I was due to go to Stratford, home of the Bard, to the theatre.

Going to the theatre in Stratford is a bucket list item for me.  It’s one I’d like to manage this year if I can.  Thursday night was supposed to be my bucket list achievement.  A friend and I were going to see The Duchess of Malfi by John Webster, put on by the RSC in Stratford.  The theatre announced it was still going ahead but the roads were getting more and more dangerous.  It was decided that rather than end up in a ditch, we would not go.

We’ve got vouchers to spend on a future performance, the theatre was very good about that.  There is still hope that I will get there this year.  It was a massive disappointment but I have to be sensible.

Then Friday 2nd March was a Big Event Day.  It is hard to explain why it was so important to me but for those that have followed my journey know that Friday was injections day.  Not only that, it was due to be my last injections day.  Except Friday the roads were awful and the police were telling people not to travel.  All schools were closed, most workplaces were giving snow days and after ten minutes of opening, no shops had bread or milk or wine.  We were in a state of emergency, honestly.

So my injections have been delayed by two weeks.  I’m disappointed but being safe is more important than anything else.  I have to be realistic about this.  I waited and saved for so long, another two weeks isn’t going to change anything for the worse.  Be patient should be shouted at me wherever I go.  If I went anywhere, that is.  I’ve not ventured outdoors since returning from work on Thursday.

It’s now Saturday.  I have tickets to see a comedian tomorrow night at a venue in Cheltenham and tickets for a different comedian at a different venue in Cheltenham on Monday night.  Two nights that I’ve had tickets for for over six months.  I have everything crossed that the events are not cancelled and that the roads are clear.

For the first six days of March I had something in the diary for every evening.  So far, the first three haven’t happened.  Blooming snow.  And I have to be so careful in this weather.  I’ll fall super easily and hurt myself which could lead to a new forever issue.  I can’t risk getting cold because it leads to other issues which I could do without right now.  ME doesn’t cope with cold weather very well.

So, having not ventured outside since Thursday lunchtime I’ve been reading more – there’s not much else to do aside from watching the shapes and light patterns of the snow outside.  In February you’ll remember I challenged myself to read more autobiographies, I read two and really enjoyed it – I surprised myself so I’d like to carry that on through the year – although I’ll need to find this section in the local library which seems to have shrunk.  When I was in there this week, I was surprised at the amount of open space, lack of bookcases, lack of books.

My March challenge is new authors.  You’ll have noticed with my lists that I have a set of preferred authors and I binge read them.  So when I was in this week, I picked up a book from the returned shelves of someone new.  I also found the receipt of the list of borrowed books of a previous borrower within the pages of one of my books.  I’ve decided I’m going to try and read these too.  I’m letting my reading be led by fate or magic or something.

June 29, 2017

Episode 4 Doctor in the House

Posted in Health stuff, June tagged , , , , , at 5:41 pm by viewfromthisdesk

This has been the episode I’ve been most looking forward to as for a while I’ve known it was about exhaustion, ME, fibromyalgia and similar conditions.  I wasn’t expecting to get a massive breakthrough, but I was hoping for enlightenment.

I totally resonated with the statement ‘I just want to feel normal, I don’t want to be this tired, I just want the pain to go away’ and then the most real one ‘they give out pills and then some more pills and then different or stronger pills and then pills for the side effects’ this is SO TRUE.  Ten minute appointments with a GP or a consultant literally just gives you a new prescription.  Meds help for sure, but they’re not the answer.

The doctor talked about how fibromyalgia and ME are mystery illnesses.  This is very true.  Doctors have told me on more than one occasion that fibro and ME are diagnosis’ given out when nothing else applies.  When all other things have been ruled out.  And indeed, that was true in my case, I spent years having tests for thyroid issues, scans for MS, blood taken for Lyme and lupus and vitamin deficiencies, electrical hook-ups for nerve damage assessment.  These were done repeatedly over these years of an unknown title to what was wrong.

I had a course of B12 injections which I didn’t think changed anything but I know some people find them amazing.  I also went gluten free for six months and felt more awful after that than ever before but again, I’ve found some people who swear by GF living and the improvements this gives to their ME.

I’ve never gone diary free but I don’t consume a huge amount of dairy.  I also don’t drink alcohol anymore.  I am aware that some people drink to numb the pain.  It’s utterly understandable, I would.

I saw the frustration in the faces of the family members.  The fed-up-ness of there not being answers, of the restrictions in the lifestyle and the reliance on pills.  And to some extent, there’s an element of suspicion – it can’t be as bad as they say.

The wish to maintain a normal life in terms of work or family responsibilities is so true for anyone with one of these invisible illnesses.  We push ourselves to be normal whilst physically struggling.  We want to be a good partner/parent/friend.  We cannot physically be that good but we push and push and push.  And yes, I’ve been told so many times that it’s not real, that it’s in my head and I just need to change my mindset or snap out of it or get (pay for) some CBT therapy so I retrain my brain to ignore the pain and exhaustion sensations.

Ignoring the pain and exhaustion and not being kind to ones self is a common thing with ME and fibro.  No one believes us so why should we believe ourselves?  Not coping with life, feeling like a constant failure is very real.  Regardless of whether you’d say that to another person or not is irrelevant, you have a reduced number of friends with ME and fibro anyway.  People are sick of you cancelling or leaving early or not getting wasted with them so they fall out of your life.

Going GF didn’t help me.  I don’t eat a lot of sugar or junk food, and whilst rainbow eating was fun, I didn’t feel any different then either.  It brought other issues and challenges as well but eating more fruit and veg is always going to be a good move and I’m working towards that every day.

I was hoping I’d get some magic solutions from the program, hoping I’d get something new to try or think about.  I’m struggling this fortnight, I’m sleeping during the day more, having chronic headaches and brain fog.  Alas, there is no magic wand, the Doctor was not in my House to solve my issues but it was helpful.  I felt like I wasn’t alone, I saw myself reflected in the people on the show.  I wasn’t a liar, I wasn’t imagining it.

I’m very certain that my mental health has a huge impact on my physical health and that’s something that maybe I need to focus on more this year.  Stop worrying, stop stressing, try and reverse or remove the depressive feelings I get.  I have no clue how I’m going to manage this but I know I have you guys to help me get through each day; one day – nay, one hour – at a time.

October 11, 2016

Long time coming

Posted in November tagged , , , , , at 12:01 pm by viewfromthisdesk

It’s bizarre how fast this year is progressing.  Yesterday was apparently eleven weeks until yuletide which is scary enough to remind me I haven’t even given it a thought yet.  I was also reminded that two years ago I was in a pretty bad place and my meds had been increased significantly and I wasn’t sure how I felt about that.

With a condition like ME, nothing is ever constant.  There never seems to be a pattern or a routine that gives you the heads up on anything.  I am aware of situations that don’t help my physical or mental well being but these are not set in stone.  For example, last week I was temping and this usually makes me really, really ill.  The long days, stressful working conditions, bright lights, driving at busy times, it all combines to usually leave me in bed for the weekend at least.  Last week was particularly mental.  It was so busy and there was no one else to take the pressure off (usually I can shout that I’m locking myself in the loo to get away from the phones for five minutes and someone else will cover them) and I ended up working ten hours on the one day.  It wasn’t fun.  And then sensibly, I decided to throw my flu jab in the mix of a crazy week.

I have a jumble of feelings about the flu jab.  I have it because it’s offered to me and I don’t usually get anything free so I’m inclined to take it whilst it’s there.  I have it because my immune system is shot to pieces and so if I got any sort of bug it would flatten me for a couple of weeks.  I don’t like it though because it usually ruins me for a good couple of days.  Last year I had to miss a gig we had planned to go to because I was so nauseous and wobbly.  This year I was expecting to feel rubbish but figured that it would be combined with post-temping rubbish-ness and I’d just get it all over with in one hit.  This year I’ve (so far) felt okay.  Aside from the usual lumpy sore arm, it’s been okay.  I like this current mix of poison that they’ve given me.

I seem to be managing in the short term at the moment, I do feel that I’m taking a micro-management approach right now.  Rather than trying to plan in scales of weeks or months I am literally going from day to day, half day to half day.  It seems to be working for the time being.  It does mean that there are extra clothes/strappings/hot water bottles/tens machines scattered around the house but it’s how I’m coping for the moment.  I have a huge amount going on in my life for the time of year, usually I’m enjoying the leaves changing and the time to sit with Pirate Cat but that’s not possible right now.  And maybe, because I’m so busy trying to do so much is why the micro management is working because I’m trying to be well, or at least vertical, for so many things that I need to just get through one thing after another.  I’m sure it will all come crashing down in a pile of tears and ibuprofen gel and whatnot but for the time being, I’m surviving.

January 8, 2015

Being honest

Posted in Health stuff, January tagged , , , , , , , , , at 1:44 pm by viewfromthisdesk

I’ve being going on for years about how I need to be more honest about how I’m feeling and how I can’t use the phrase ‘I’m fine’ to cover all my lies.

So, deep breath ….. today is a bad day.

There you go.  It’s out there.  It’s flying around like an enormous neon sign, telling the world that I’m really rather useless and pathetic and rubbish.

Last night I got home from work feeling okay, I fetched firewood, lit a fire, watched some tv and then slept for nearly two hours.  Spent the rest of the evening feeling groggy, nauseous and cold.  Went to bed and slept for twelve hours.  Failed to get up for work at the appropriate time and didn’t wake until 11.59am.

I now feel utterly rubbish.  Weak as a kitten, groggy and fuzzy and ache like I’ve been in a fight.  Really light sensitive and my hands and wrists are KILLING me.  Couldn’t put my work trousers on because after fastening my bra, I couldn’t work the zip and buttons.  So I’m in the office with soft trousers and a jumper.  Get me looking professional as heck.

If ever there was a time I wanted to be able to crawl back into a cave and hide and cry and pretend that reality isn’t happening, this is it.  Honesty is horrid.

December 4, 2012

What’s with the traffic this morning?

Posted in December, Health stuff tagged , , , , , , at 9:17 am by viewfromthisdesk

It took me thirteen minutes to drive across town, that’s daft!  I know that I *should* have walked, what with it being a gorgeous morning but that’s the thing with M.E. whilst I may feel that walking is a good idea, my body would rebel and I’d be flat out asleep for a few days.  Pah.

So, quick update for you: it’s been a year since I started WW, and I’ve managed to maintain my finishing weight which I’m really pleased about.  I’d kinda like to lose another half stone by the beginning of February but I’m not off to the best start because the shops are full of mince pies and cheese selection boxes <drool> so I will see how things go.  I would say watch this space, but I’ve not been the best blogger, have I?  Sorry.

Update on the medical stuff: M.E. is still pants.  Hate it.  My fibro is still making me want to scream and cry on a daily, no, hourly basis.  My lovely GP tweeked my pain meds last week and warned me that one of the side effects, whilst I got used to it, could be insomnia.  Oh how I laughed.  Hysterically one might say.  Insomnia with M.E.?  Pull the other one.  Well, he was right and that’s really, really rubbish.  Not that the fellow was right but that I had insomnia for about a week.  Oh what a lovely, not at all grumpy person I was.  He’s also (following my request) going to see if the dietary team will see me.  There’s lots of research into diet and intolerances and M.E. and I’d like to see if there’s anything I could do or try to see if I could increase my energy or be in less pain, that would be lovely.  Fingers crossed they’ll take me on.  I’m also seeing a new specialist in Birmingham who is looking into lots of mysterious things to maybe explain why I have so much numbness and lack of feeling as this isn’t a usual thing with M.E.  Got to go back to the gynae team which I’d like to say is pants, but that’s a really poor joke.  Thought I’d finished with them seven years ago but it seems, it isn’t to be.  Cheap thrills on the cards for me then, middle aged men having a rummage, hoorah.

Changing the subject (very) quickly, am going back to Lundy for Christmas. Can’t wait.  Sunshine, fresh air, good company and a change to relax and recharge.  Bliss.  But I haven’t got an advent calendar to count down this year, so no chance of chocolate for breakfast.  

Hmmm ….. wonder if the pound shop has still got some?

July 31, 2012

Olympic Regret

Posted in August tagged , , , at 9:32 am by viewfromthisdesk

When I was at school I used to run.  Cross country in the winter, 200m and the relay in the summer.  Couldn’t throw or jump for toffee but I loved running.  I love the Olympics, the Commonweath Games, the Diamond League events throughout the year.  I love the Winter Olympics, the mad sports and impressive sports people.  I really like sitting with an atlas during the opening ceremony to learn where all these new and fantastic sounding countries are.  Even now, all these years on, I’m still enthralled by the games.  And my regret?  That I didn’t apply for tickets.

When it was announced that London had won the games, I have to confess, I was gutted.  I wanted Paris to win.  I didn’t think we, as a country could afford the games and we certainly didn’t have the infrustructure.  We didn’t have a 50m pool ‘in the south’ and Crystal Palace, that historic home of athletics, has been looking tired and dated for such a long time.  I wanted Paris to win so that there was no time difference for the viewer, no jet lag for our athletes and moreso, no cost to the humble tax payer.  As time has passed, I’ve been massively impressed by the work that has gone on, the fact that the stadiums are finished, the venues look brilliant.  Lord Coe still gives me the creeps, he’s got no charisma, no excitement to him.  He, a former olympian just doesn’t look all that bothered by these games.

But now, I’m sat shouting at the tv, the computer, the BBC ticker feed.  I cried when Tom and Pete messed up their fourth dive yesterday and I cheered when the boys got their medal of ever changing colour for their jumping and tumbling yesterday.  I’ve shouted at both cycling road races and still have the time trials to come.  I’m learning about horsey events, sword fighting and the multitude of ball games on offer.  I can’t wait for the athletics, my true passion.  There will be more shouting, more crying and more regret.

I realise now, that my joints and my body would simply not have coped with the journey, let alone the standing, the queueing, the sitting and waiting.  The magic of being at the games would have been massively overshadowed by the pain and fall-out.  I’m seeing friends and family mentioning and sharing photos of their games experience and I have to confess, I’m so very deeply jealous. 

I may not make it to the games physically, but I’m there in spirit and emotion.  If the Commonweath Games could make it to the Midlands, I’d be a happy girlie.  Fingers crossed.

June 12, 2012

Dear Diet

Posted in June tagged , , , , at 11:22 am by viewfromthisdesk

Dear Diet,
It’s just not working out between us. It’s not you, it’s me.
I just can’t stop cheating on you.
Love, Michelle

 

I robbed the above from my cousin.  It just made me laugh so much.  So true.

However, my weight loss journey is going well still.  I’m maintaining my ‘gold’ weight which is good.

My health journey is a bit more precarious.  My OT is leaving in September and there is currently no replacement.  My physio is good but a bit of a task-master which frustrates me.  I want practical help, not told to check my shoulder posture every five minutes and write lists at certain times of the day.  Hey ho. We shall persevere with the system.

I did way too much last week.  I know that now.  Now that I’m in the midst of a very painful crash.  Thought I was pacing myself quite well – yes I was busy but it was staggered busy. Maybe not eh?  I’m so sore that I’m considering seeing my osteopath to try and make things better.  When I’m looking for *that* phone number, I know I’m in a bad way.  Ooops.

May 6, 2012

Bank Holiday Blues

Posted in Health stuff, May tagged , , , , at 3:55 pm by viewfromthisdesk

So, May bank holiday weekend, typically associated for me with a weekend camping at Stoneleigh Royal Agricultural Showground. No camping for me this weekend. My joints cannot take the fluctuating temperatures, the uneven surfaces, the unpredictable day. So, hubby has gone for the day and he was out all day yesterday too leaving me feeling very lonely and miserable.

Now I know that some of you reading this will be most annoyed that I didn’t call you and ask if you wanted to spend the day together.  I’m sorry about that, but honestly, I’m not great company.

I’m lonely and miserable and tired and feeling pretty pathetic.  This stupid, evil, horrid illness has wiped out all scraps of self respect and confidence I ever had.  I’m wanting to go in the garden and plant seeds so I have salad and veg all summer and I can’t open the fiddly little packets, can’t pick up the tiny seeds, can’t stand long enough to pop compost.  My hands don’t work, my hips are in agony and yet another favourite thing of mine has been stolen by this wretched condition.

I started to sort through all my craft items too yesterday which wasn’t great for my brain.  I used to design and make (dare I say it myself) gorgeous cards and I was so proud of my work.  So pleased with the joy my things gave others.  I can’t do it anymore, I can’t hold or cut or move or stick.  So it’s over.  I have ticked the box on my tax return that says the business is finished, I have deleted my facebook page and probably, the most drastic of all, I removed the vinyl lettering off the back of my car which gave my website details.  Another door closed.  Now I just have to clear everything out, sell the bits and move on.

So, I spent large chunks of yesterday wanting to just crawl back into bed.  It’s the least painful place to be in my world.  Today, I was prepared for wanting to do that again, I took my phone and kindle upstairs, ready for a day of hiding away from the world under my duvet.  But then the sun came out and convinced me that getting dressed and just doing something as simple as pegging out some washing, whilst exhausting, is actually a positive move in the day.

I want to weed and prune and mow the lawn though.  I want to plant seeds and tidy the greenhouse and start another year of self sufficiency.  I’m so deeply frustrated, so annoyed at having to rely on others for the simplest of tasks.

I’m not writing this for attention.  I’m not wanting you to ring me or text or email to ask if I’m okay.  I’m just being honest.  All too often I gloss over the cold hard truth for you.  Not today.

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