Weekly roundup

My Dad turned 80 this week.  I don’t think any of us can get our heads around the fact he is quite so old because until the recent trouble with his legs he’s been as fit as a Mally Bull his entire life.  He didn’t want a party, but we had a family meal out last Sunday and on his actual birthday 6 of us went out for lunch.  The surprise of the day, however, came as a shock to all of us.  My nephew (his Grandson obv) has been living in Australia for the past 18 months.  We knew he was going to move on shortly but were all expecting him to go to Asia with his girlfriend, however he turned up out of the blue on his Grandad’s birthday without telling a soul, not even his parents.  My Dad was chuffed to bits 🙂

I finally found out this week why Dr Sargur at Sheffield wouldn’t see me.  She basically told my GP that MCAS isn’t curable and any treatment could be offered by my GP.  FFS.  My GP has never heard of MCAS and has no clue what to treat me with!  She didn’t even want to do the MCAS tests at the lab saying “it’s irrelevant what your mast cells are doing, the treatment is the same”.  FFS.  Again.  I told her I wanted them done, so she’s going to find out what’s needed then I have to book them during a flare.  Only I can never really tell when I’m flaring as I have hives all the sodding time, so I’m going to tell her I’m flaring then take a tablet I know I react to, like paracetamol.  It’s sneaky but I need to know what’s going on.  The lumps under my armpit and on the inside of my elbow are still there (it’s been 8 months) but my GP wasn’t the slightest bit interested.   The ultrasound showed it wasn’t my lymph nodes so that was that.  So I asked her what was causing them and she said she has no idea.  Fucking super.  So let’s just ignore them, then, shall we?  Yes, let’s do that.

I went for yet another look at the bungalow I’m interested in this week.  I knew the floors were sloping and needed to know why, so we got permission to lift the carpet in the hall.  This is what we found – eeekkk!

Central heating pipes had been put in the concrete with no plastic casing or anything.  The cement had corroded the copper pipes and they were clearly leaking and had been for some considerable time.  The water has caused the entire concrete floor of the house to crumble and sink and there is now a 1″ gap under the skirting boards where the floor should be!  I’m assuming the entire ground floor will have to be dug up and re-laid, which means stripping the kitchen and bathroom (and everything else!) out.  It’s a humongous, and very expensive, job and there’s the added cost of having to put my furniture into storage and rent somewhere for a few weeks while all the work is done.

Not only that, but there is a deep inspection pit in the garage.  These are often below the water table so can flood, so we took the cover off for a look.  The good news is it was dry, despite recent very heavy rain.  The bad news is there were 2 pot holes in the bottom of the pit which are worrying everyone just in case they’re the start of a sink hole!

Needless to say I am forking out a few hundred quid on a geo/structural survey this week.  I need to know what’s really going on before I can decide if a) I still want to put in an offer and b) what the offer should be.  I may lose the money but it’s better than buying the house only to wake up one morning to find I’m at the bottom of a 30 foot deep hole in the ground which has suddenly opened up!

In the meantime, I’ve checked out the options for selling my house.  Estate Agents want nearly £3000 which is ridiculous for what they do, although I don’t pay anything if the bungalow falls through and I pull out.  Purple Bricks want £899 and if for any reason it doesn’t sell they still want £899!  So I’m opting for Doorsteps.co.uk who charge £99 – I don’t mind losing that if the sale doesn’t go ahead.  You have to take your own photos and do your own viewings, but that’s no hardship being as though I’m a photographer and am at home all day.  In addition, all houses now have to have an Energy Performance Certificate (EPC).  The Estate Agent wanted to charge £120, Purple Bricks £76 but I went to the Assessor directly (there’s a list on the Government’s website) and he did it for £50!  You really do have to shop around for stuff these days because the savings can be huge.

I’ve definitely skipped a period this month which I thought would be great.  However, I usually get endo-related period pains the week before I start which go after my period ends, but because I haven’t had a period I’ve had permanent stomach pain now for 3 weeks.  It’s been so bad it’s woken me from sleep and makes me feel nauseous 24/7.  To add insult to injury I spent Friday and Saturday with a stonking migraine.  I was soooooooo fed up I can’t even tell you.  In fact, after I’d spoken to my GP on Friday and realized I’m totally alone with the whole MCAS situation (and the hEDS and ME situations if I’m honest) I lay on the kitchen floor and sobbed my heart out.  I get so sick of managing all this crap on my own.  However, I woke this morning with no headache and am back to my usual perky and strong self – long may it last 😀



4 thoughts on “Weekly roundup

  1. Glo

    Unbelievably frustrating for you. Doctors can sometimes be so useless.
    It’s a good thing you pulled up that carpet in the house you’re thinking of buying. That would put me right off it as I’d be waiting for the next thing to go wrong. Whatever you decide I hope it will go well for you.
    May you find doctors who care and a cozy home with no problems.


  2. Sarah

    I know how you feel re drs. I have a rheumatologist that is so vile I really need to ask to change. I don’t produce my own steroids and I’m on a dose higher than I should be but she doesn’t listen to me. If I go down, then my ME is debilitating along with excruciating stomach pains where I’m rushed to A&E every month! I understand they want me not to develop side effects from the steroids but it’s a balance for me, risk the side effects or quality of life. I too have been left by the endocrinologist to be treated by the GO surgery who rang me to ask why I needed the emergency injection. I pointed out you wouldn’t leave an insulin dependent without insulin. I seem to be having more crisis than others so I need to inject. I’ve cried so much in the last year. I’m pre diabetic too but have the symptoms. I know you’re like me where you are borderline on blood tests but very symptomatic, and the GPs won’t do anything about it
    Have you tried PALS at the hospital. If it was me and you have the emotional strength, I would file a complaint which they have to address. Also when they are inspected the complaints are looked at and taken into account
    Sorry to ask, but have you tried Tumeric capsules. I reacted to them and wondered whether it was a mast cell issue
    Take care, big emotional strengthening hug
    Sarah x


  3. Lindsay

    Wow, you have a lot going on, Jak! Happy birthday to your Dad! What a nice surprise that your nephew was able to come.

    Glad you checked under the floor of that house! Looks like it could involve a lot of work. Hopefully this will provide answers as to what’s going on.

    Sorry about the migraine 😦 Hope it stays gone.



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