Weekly roundup

I had my first free hour’s appointment with a Counsellor on Tuesday.  I chose her because she had years of experience of working in a hospice, which I thought fitted my situation as she’s used to illness and bereavement.  She has also worked in the addiction field and for a mental health charity.  She was just as I expected and seemed very on the ball with picking up on my issues.  I had a lovely hour offloading and was really eager to continue to see her………then she dropped a bombshell.  She’s retiring early next year and could only see me for 12 sessions.  We both agreed that this wouldn’t be enough – I particularly want someone in the background for when my Mum does pass away which I know is going to bring up some pretty strong emotions.  I was gutted to be honest and felt quite tearful on my drive home.

There are limited people to see in my rural area, but I settled on someone else who also had both hospice and addiction experience.  I contacted her and asked if I could take Bertie to the sessions – due to his separation anxiety I can’t leave him alone on his own and had no-one to look after him.  She said no, so that was that.

As one of my “issues” is that I’ve been left to fend for myself most of my life these two experiences haven’t helped much.  I logically know that these things happen, but I’m now rather hardened to the whole counselling thing and think “oh fuck it, I’ll just cope on my own like I always have!”.  So I’m now not sure if I’m going to pursue it.  Every time I ask for help I’m let down, then people wonder why I’m so independent – it’s because I’ve had to be.

I’ve been wayyyy overdoing it the past few weeks and can feel my body protesting loudly.  I’ve felt fluey and drained, which is classic “post exertional malaise”.  I must look like shit too, because someone I barely know at Camera Club asked me on Wednesday night if I was feeling unwell!  I also knew that my MCAD was flaring (no surprise there if M.E. is mast cell related) and can now recognise the signs:

  • My sleep worsens and I start waking two or three times in the night.
  • I start needing to pee in the night.
  • My reflux gets really bad and I develop a cough as stomach acid gets into my lungs.
  • My skin and scalp start itching.
  • My bowels get sluggish.
  • My back starts to really hurt…..

….and then I get hives.

I know I need to slow down and rest more, but it feels almost impossible to do.  I look at my diary for this coming week and it’s jam packed with stuff that just can’t be ignored (grocery shopping, making a Vet appointment for Bertie, sorting my broadband contract out, still sorting out my laptop buggered by the Windows 10 anniversary update, washing my car and checking the tyres, fixing the hinge on the kitchen cupboard door, putting the recycling out, doing the laundry, ordering a card for my cousin’s 60th birthday, worming Bertie and clipping his toe nails etc. etc. etc.).  I’m not sure how I can spend a lovely week resting in bed in the face of all that, bearing in mind that however crap I feel I also have to make 3 meals a day and take the dog out.

However, the week hasn’t been a total right-off.  Being as though it’s half-term I managed to borrow my friend’s kids for a little photo shoot.  They love being my “models” and I give them a poster-sized print of the pictures to say thank you.  Here’s the lovely Erin (shared with her Mum’s permission):

Having never taken photos of people until this year, I find I’m really enjoying it 🙂  Depending what you do with the picture can make the same person look completely different and it’s fun experimenting.

The clocks went back here in the UK last night officially ending British Summer Time, but Bertie didn’t get the memo.  He wakes every morning at 6am and this morning was no different.  Only of course it’s only 5am and everyone but us are still sleeping soundly in their beds.  So much for having an hour’s lie-in!

 

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13 thoughts on “Weekly roundup

  1. Glo

    Keep on with your counselor and see if she can refer you to anyone else. Tell them you have anxiety when separated from the dog. In the states there are lots of people who are allowed to bring their pets places they ordinarily couldn’t go due to anxiety issues. A little twist on the truth for Bertie seems reasonable to me. If you are happy with the present counselor see her while you can. Its also really hard to convince your pets that the time has changed. Mine never believe that people would do something so ridiculous. Hope you find a little time to rest.

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    1. Jak Post author

      Thanks Glo. America is so far ahead of the UK in terms of counselling – the service is dire here. There’s really only one more person for me to try and I’ll ring her when I feel a bit stronger emotionally. Jak x

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  2. Livvy Woodburn

    Jak, you will probably tell me to butt out but I am worried about you. Ok I don’t know you in real life or even much online really but I know the alarm bell signs when someone with chronic Illness is needing help. I know when you get let down so much you don’t believe anyone can help or it’s easier & less stressful to just do things yourself, that getting help for chronic illnesses that are rare & poorly understood can seem impossible & you feel like your the only one people can rely on to be strong… but no one is super woman and we all need some kind of help or support somewhere to share the burden of chronic illness. Even if it to share your emotional burdens with talking to a professional or getting the SS to help cook for you a bit, don’t give up getting the help you know you deserve. Xxxx

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    1. Jak Post author

      I really appreciate your concern Livvy, thank you. It seems to be harder than I ever imagined to get the help I need, so I often just give up as the process is exhausting and disheartening 😦 I’m still getting over what feels stupidly like the rejection of the counsellors (I know that’s irrational!) and will maybe try one more person when I feel a little bit stronger. Getting Social Services to “help” me in the home isn’t going to happen – they send a different carer every day who I then have to explain everything to, which is more exhausting than just doing it myself plus they charge £16 an hour (can you tell I’ve had bitter experience? lol!). Jak x

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  3. Lindsay

    love the photo – amazing, as usual!

    i don’t know if you have it there in the UK, but here in the states some doctors, including counselors can do appointments over video chat. if there aren’t many counselors in your area, maybe that’s a possibility….?

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    1. Jak Post author

      Thanks Linds. They don’t seem to do video chat here, but some will do telephone appointments. I think I just wanted the first one to be face-to-face so that I could meet the person and get a feel of whether or not we click. I’m still pondering on whether or not to pursue it x

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  4. d

    I completely understand the feeling of “oh &$^* it” when you come up against another road block. It is so frustrating. When you’re up for it though, keep trying. I know a face to face would be ideal, but consider that you may have the same impression of a connection with someone in a phone call as well. You’re a survivor so you will persevere in spite of it all! I hope you are able to find someone you can talk to.

    Lovely photo – you have a talent for many different styles of photography.

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  5. Karen, The Walking Allergy

    Why do you have to wash your car? 😜 Hang in there. Having had a bit of counseling in the past-12 sessions is a LOT. I know you want to have continuity, there are advantages to not having to ‘break in’ a new person. There are also advantages to changing counsellors… For me, a good counsellors is someone who can see my perspective, then turn it around so that I see it a different way. Those fresh perspectives start to wilt after a while.
    A charity has just begun here, what they do is have 2 or three adults living together with a career who comes in during the day. Because the people can ‘pool’ their resources (one house to clean instead of three…). Which sounds like a lovely idea, except I can’t live with other people!! The Hubs and the kids are willing to do the extra effort to keep me safe, I don’t think I could ask anyone else to do that….

    It hurts my brain, too.

    K

    Did I tell you that I now ‘officially’ have IBS and SEID (I can’t use this acronym without cringing.). Just because the local government hasn’t even heard of MCAS, doesn’t mean that a complex disease program wouldn’t be very helpful. And the guy running it gets it! He actually has learned the wrong information from our local “experts”, discarded it as insufficient and done his own thing anyhow. Treating individuals instead of their conditions. What a novel idea!

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    1. Jak Post author

      See photo in my latest blog post on why I need to clean my car LOL! https://mastcellblog.wordpress.com/2016/12/03/roundup101/

      I couldn’t live with another person either, due mostly to my noise sensitivity and my need for a precise routine to preserve my energy levels.

      Stupid bloody name SEID. What’s wrong with ME – why won’t they just call it that?!!! Glad at least you’ve found someone who treats you like a human being, not a statistic. Jak x

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      1. Karen, The Walking Allergy

        My GP said to me that in the ER, they treat conditions, not people. Well, that explains a lot, doesn’t it? This is WAY too individualized a condition to use a flow chart for… you have to actually ask the patient, and believe them. (YES, I can get anaphylaxis from pulling my mask down momentarily and there is a smoker sitting next to me.) I don’t care if you don’t think I fit the “canadian criteria’ for MCAS (um…criteria? Since when???) I just care if you give me the damned epi!

        And now- the fact that I haven’t gone to the ER in a year is being used to demonstrate that I really couldn’t be that sick, nobody deals with anaphylaxis at home… They sure as hell do if you don’t give them epi when they need it…. I swear- if I could put every doctor though a course in logic, we’d all be much better off!

        Particularly irritating week- I think this may well be the angriest I have ever been in my life. It’s white anger. Past seeing red. Feels like a dream…

        Karen

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        1. Jak Post author

          Sending big hugs. I feel awful I haven’t caught up with your blog in ages – barely have time to write my own – but am hoping to have time over the hols to catch up with my internet friends. Sounds like you’ve been having a rotten time and arsehole medical staff really don’t help! xx

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