Weekly roundup

I’ve had one of those weeks where life has seemed tough.  Every joint is hurting, I’ve struggled to sleep for over 3 months now and am beyond exhausted, I’ve had a bad run of migraines one of which kept me up all night on Thurs vomiting and I had a mast cell reaction on Fri night which now means I’m petrified to take my H2 anti-histamine.  So I’ve had a break from it, and the anxiety, and now have rampant reflux which is simply agony and my cough is back so acid is obviously spilling into my lungs.  After 20 years of living with these kinds of symptoms, and more, every second of every day, I’m kinda tired of the whole thing.

I’m not getting on very well with my Smart crutches.  I ideally wanted a black pair, but after reading the blurb realized I needed the smaller crutches with the shorter leg and arm rest lengths and they only come in red, blue and grey.  I settled for grey, which are actually still very smart with black stripes, and they are definitely much lighter and more user friendly than the NHS gutter crutches.  However, the cuff which goes round your arms is massive and as I walk along my arms just fall out of them.  Not sure why they’ve made crutches for tiny people and put a standard cuff on them?  I’ve kept meaning to ring the company for advice, but it’s just another chore to add to my list and I’ve not gotten around to it yet.  I think I’ll try sticking some foam inside to pad the cuff out and make it smaller (I don’t want to use any kind of tie because it makes them impossible to put on or take off on your own).

Monday I took my Dad 30 miles to our local hospital for a follow-up endoscopy (he’s had severe stomach problems for years).  We got there at 1pm, his endoscopy was due at 1.30pm, it takes about 90 minutes, so we thought we’d be home about 4pm.  Think again.  We sat in the packed, boiling hot, waiting room on rock hard chairs until 2.45pm when they finally called his name.  I told the nurse I was popping into the city to do some Xmas shopping for my Mum and would be back in 90 minutes.  I got back to the hospital dead on time to find my Dad, stony faced, sitting in the waiting room.  Thinking he’d finished early and had been waiting for me to pick him up I apologized, but he said “oh, don’t worry about it – I haven’t had the damned thing yet!”.

By that stage he’d been sat there for nearly 3 hours.  I pressed the buzzer to the theatre and asked a nurse what was happening.  Apparently there’d been several emergencies in that afternoon, which I understand, but not a single member of staff had been out to the waiting room to tell any of the patients what was happening.  They’d just left them there.  My Dad was told not to eat or drink anything for 6 hours before the procedure.  He wasn’t up in time to have an early breakfast, so hadn’t had a bite since his supper at 5.30pm the night before, nearly 24 hours earlier.  Good job he’s not diabetic.  By the time he had the procedure done and we arrived home it was 6.30pm – we were both totally fed up and my Dad was absolutely ravenous.

The week has not been a total right-off however.  As regular readers know, my Mum has been coughing up blood again and had an emergency CT scan last Tuesday.  We got the results and there has been no significant change since her last scan, so that was a massive relief.  We still don’t know why she’s coughing up blood, but it has happened before, went on for 3 months, then just stopped.  I’m convinced she has Ehlers-Danlos and has very fragile capillaries and it could just be that, because of her severe recent chest infection and all the coughing she did, she’s damaged some of them (is that even possible?).  She also has horrendous nose bleeds for no reason anyone can fathom and which can happen in the middle of the night while she’s sleeping.  Anyway, they’ve made her an appt to see a pulmonary specialist in Feb.  Not sure why, as there’s nothing anyone can do about her lungs, but we’ll go anyway and see what they say.

My other big news of the week is that the results of my second Camera Club competition were announced on Wednesday.  It was on a set theme of flowers, so I submitted 2 very different pictures: one of some poppy seed heads taken in my garden, and one of some wild poppies in a rape field taken on a walk with Bertie early one morning.  To my amazement the seed photo won me 2nd place and the poppy flowers won me 1st!  As I’d never taken a “proper” photo in my life until 3 years ago and am completely self-taught (which is code for ‘haven’t a clue what I’m doing’) I’m always gob-smacked that seasoned photographers think my pictures are good in any way!

1st place

1st place

2nd place

2nd place

Right, it’s now 8.30am and I really must get up and have some breakfast.  My dog walker doesn’t come on weekends, so I have to take Bertie out at 9am which, with the new scooter, is no bother.  I always wake between 6am-7am, regardless how little sleep I’ve had, and do nearly all my blog posts at this early time of day as my brain works at its best just after I’ve woken up.  I know this totally flies in the face of most people with M.E.’s experience, where their brains simply don’t work in the morning, but I’ve always been a Lark and do all my paperwork before 11am because after that my brain is simply not capable!

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2 thoughts on “Weekly roundup

  1. Teri Scherzinger

    So sorry you are having a time of it. I too have had a rough patch this week. I have ME and probably mastocytosis. Had the blood and urine test and going to have a bone marrow biopsy after the first of the year. I was treated for breast cancer in 2006, (chemo, radiation & hormone therapy for 5 hrs). Right after finishing all the treatment & thinking life was going to be great, the ME hit me hard while I was on a cruise with my husband, daughter & son-in-law. I ended up in the room sleeping for 2 days of the cruise and gi issues in full force. I was relieved to get home!

    Anyway, through my own research (doctors not very helpful), I started suspecting a mast cell issue, saw an allergist, and so it goes. I have some peace at least knowing what the h#ll happened to me. Have had all the ballyhoo of people thinking I’m depressed, mental all that – you know.

    Your blog is really inspirational & your sense of humor is wonderful! Hang in there with your cute doggie. I also have a dog (pitbull). Used to run and rollerblade with her for a solid hour. Luckily she has aged in conjunction with my disease progression. You have inspired me to look into getting a scooter so I can get out with her again. ;~)

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    1. bertieandme Post author

      Hi Teri

      I went down with ME on a cruise too! Sorry to hear you have similar problems to me, it sucks. Good that you’ve found someone to do some mast cell testing though – wish we had that here in the UK.

      I can definitely recommend a scooter to take the dog out. My Bertie is soooo good. He knows to always walk on my left and if there is a parked car or something he knows to come to my side of it so the lead doesn’t get tangled.

      Jak x

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