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  • Mrs Chakotay 2:25 pm on October 2, 2015 Permalink | Reply
    Tags: blood pressure, , , , , , , , , , , , RA, Sarah Myhill, , , ,   

    Roundup of the Summer 

    I just thought, as the sun is streaming in where I am sitting and brightening my spirits, that I would do a quick (ha! Sorry it got long!) roundup of what’s been happening to me over the summer.

    I’ve been very quiet, I’m sorry. I have noticed a pattern of becoming ill just as the summer is starting and getting a bit better as the weather and the seasons turn to autumn, but this year I have got progressively more ill as the summer has gone on – perhaps it’s due to the ‘Indian’ summer we’re having down here in Cornwall? (Which is lovely by the way!) I actually love the heat and the sunshine, but for some reason it doesn’t agree with my body.

    Somebody suggested I might have reverse SAD, and I have struggled with depression and mental health issue this summer, so I don’t know if that is the cause of my summer lows, but it definitely wasn’t helped by some blood pressure tablets (Amlopidine) I was given. They did nothing to help my hypertension, but they totally flipped me out mentally. I stopped them and tried again three times so I know they were definitely the cause – I was experiencing racing thoughts, ultra-rapid changes of mood, agoraphobia and suicidal thoughts. I even contacted Outlook South-west for help, but they were only interested in the agoraphobia. I have had a series of telephone therapy sessions but it hasn’t really been very helpful. The racing thoughts and mood changes stopped as soon as I stopped taking Amlopidine, but the rest has stuck around. I think that all the stress and upset of eviction and the last few years made me vulnerable and susceptible to mental illness and Amlopidine pushed me over the edge.

    At the same time, I was feeling very extremely ill physically, with increasing numbness, tingling, balance issues and migraines in addition to all my other symptoms. After being told for the umpteenth time by my GP that “there is nothing we can do for you”, I made the decision to change surgeries and get myself a new GP.

    It was SO totally the right decision. Already I have been offered referrals to a Neurologist to rule out MS and a Rheumatologist to investigate the possibility of RA or Sjogrens with the promise of further referrals to come. Finally I am hopeful that it will be possible to get to the bottom of what my health issues really are and then move towards healing and health after so many years. (12 and counting)

    On medical advice, I agreed that the vegan diet was doing me no good, and I have moved back to a paleo / primal style low carb diet. At first I only added fish but now I am back to eating meat as well. I began to feel better for the first three weeks and then crashed very badly. Having started to read Dr Sarah Myhill’s excellent book “Diagnosis and Treatment of Chronic Fatigue Syndrome: Mitochondria not Hypochondria”, I have realised I was probably going too low carb (under 20g per day) and on her advice I am starting to take a supplement of a specific sugar called D-Ribose which she says is needed for certain hormonal conversions in the cells. It is a sugar which the body can normally synthesise itself, but people with ME can’t make it so it becomes an essential supplement. I will let you know when I have read more of the book and if I see any improvement. I’m also looking again at the Trim Healthy Mama diet (you know, the one that I slated not so long ago), realising I may need to incorporate some E meals (with light carbs) due to my health issues.

    Incidentally, since going back to wheat-free, low carb / paleo / primal my blood pressure and cholesterol have almost normalised. Sadly, the weight is not shifting at all. (But at least it’s not going up any more as it did on vegan and vegetarian diets)

    I haven’t been able to go to church since about May and that has definitely contributed to my feeling of malaise mentally. Even though we are living in town, I have been very isolated indeed. On the few occasions I have driven out to meet people I have been very ill afterwards so I am having to take it very easy and pace my energy out carefully.

    On the housing front, I am not happy at all. Yesterday we went to see a house. It was big, but dark inside and it’s far away from husband’s work, so he didn’t like it and I can’t seem to persuade him to move. But it was beside a beautiful babbling brook that you could hear from inside or sit outside and watch it. When I got home I cried and shook with rage and grief. I feel so angry that husband moved us away from our home 5 years ago to seemingly never-ending stress, and doesn’t seem to care that it has made me so much sicker, that I haven’t been able to make friends, that I’m miserable and ill and that a three storey house is so totally inappropriate for somebody with ME.

    I sat beside my bedroom window this morning and tried to imagine that the rumbling noise and clatter of building trucks and machinery was a babbling brook instead.

    So my situation now is mixed. I am very happy and hopeful about my change of GP, but desperately unhappy about my living situation (and none too happy about my marriage).

    I’m not sure whether I’m hopeful that things will improve as the autumn rolls in. I feel that I can’t be happy in this house, it’s just so stupidly arranged. Kitchen on the ground floor, living room on the first floor and bedrooms on the second floor. I just can’t cope. If I moved down to the tiny single bedroom on the ground floor, I’d need to go to the second floor to wash. I could go on and on but I won’t. Suffice to say, this house is making my life and health much worse, and I can’t wait to get out of here. The prospect of staying makes me desperate.

    To finish on a light and happy note…. I try to come up with a list of 5 things to be grateful for every day (I sometimes post them on my @health_Shmi twitter account). Sometimes I struggle to come up with anything, in which case I am grateful for the 5 other people in my family. But here is today’s list: sunshine, hifi playing random CDs (Youngest son is my DJ), happy fat cat laying in the sun, daughter made me a coffee, and finally it is Friday and the weekend is coming 🙂

    Enjoy!

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  • Mrs Chakotay 2:12 pm on October 17, 2014 Permalink | Reply
    Tags: , , blood pressure, , , , , , , , , , , , ,   

    Autumn Update 

    autumn

    When all my activities finished at the end of term before the summer holidays, I was relieved because I knew I had been overdoing things. But what I hadn’t realised was that when the adrenaline (or whatever) stopped, I would completely crash.

    I spend a lot of time determinedly denying that what I have is M.E. I have eight pages of notes to bash my GP with – there are so many other things that I should be tested for, that should be ruled out before they give up and diagnose M.E., so many things they should try, so many things they could offer before they tell me that “there’s nothing we can do”. But this thing of feeling terrible when you stop, this ‘post-exertional malaise’ is typical of M.E.

    The whole summer was essentially ruined because I was too ill to go out – despite living a few minutes’ drive from the beach, I wasn’t able to get there. I wasn’t even able to sit out in the garden. I haven’t been this ill for a long, long time.

    So I haven’t resumed Scouts or Guides, and I have given up Boys/ Girls Brigade, with no plans to take it up again any time soon. I had another reason for dropping Scouts and Guides – after nearly two years of volunteering, neither of them had bothered to do a CRB check (or DBS as I think they’re called now). Neither had they sent me for any training, despite me repeatedly asking for it and indicating that I was serious and wanted to be a uniformed officer. In fact, at one stage I was asked to take over the section I was working in, and I indicated that I would be interested to do it, with help, but the help wasn’t available.

    It seemed to be the case that it was completely up to the volunteer to ensure that they have the correct training and certification, and nobody seemed bothered. I wasn’t prepared to carry on in the position where, if something when wrong, I could be liable. That really isn’t acceptable.

    There were a lot of things about Scouts in particular that opened my eyes to bad practice and some of the inappropriate people involved in it, and I have to say that I would be very, very reluctant to put any young children of mine in a youth group that I hadn’t investigated thoroughly, or that I could perhaps be personally involved with. The willingness of parents to leave very young children with people who are really not at all suited to be working with children amazed me. The stress of that is something that I am very happy to be leaving behind.

    I have had approximately ten weeks rest now, and although I’m not really feeling better, I am hopeful that my GP is now willing to offer me something since he has discovered that my blood pressure has shot up suddenly (although he doesn’t know why – he likes to blame it on my weight, but I haven’t put any on in the last year, and this time last year it was basically perfect). I have no idea why, but hopefully some medication might start to make me feel more human again.

    Unfortunately, I am cross that in all that time, being unable to go to church, I haven’t had a single visit or even a phone call. I have been getting more and more cross about that as the weeks have gone on. I assumed that they knew how ill I was because my eldest son is a bell-ringer and sees them every week. But he told me last week that my husband told them I was “fine”. Because apparently, from experience, this is how he deals with things. They have to be private, nobody else is to know, in case we worry people. Please.

    Really, am I an awful person for wanting to tell people I am ill and need help? Should I be worrying, like he does, more about everybody else not worrying?!

    Needless to say, I have become progressively more depressed and distressed over the last ten weeks. But part of that is to do with having too much time on my own to dwell on all the trauma and distress from the events of the last few years. While I was busy, I thought I was moving on to a new normal. But now I am right back in that dark place of grief.

    I have continued to wonder about adoption. One of my online contacts had got to the point of being approved by panel, but then decided that she couldn’t go ahead. It’s huge. Taking on a traumatised child – even a baby – is so much more fraught with difficulty than having a baby yourself. If I manage to get my health to a point where I could consider going ahead, do I have the emotional strength to cope?

    Additionally I have had the stress of having to make a formal complaint about my boy’s paediatric diabetes team. I won’t bore you with the details right now, but suffice to say that we have elected to transfer hospitals in an effort to secure a better service. But this has been stressful and upsetting to say the least. But I have done it.

    I discovered today that my old friend’s wife, the one who made a fuss a few months ago that I hadn’t enthused about her pregnancy, has blocked me on both my accounts. I don’t care much about her to be quite brutally honest. She is a shallow, selfish character who would never even want to bother trying to see somebody else’s pain or point of view. I felt like sending him an angry, ranting message or unfriending / blocking him in retaliation. Instead, I just sent him a message telling him that I am sad.

    When you have lost babies, or have a sick child, or you have to deal with ill health, you are going to have some level of underlying sadness. I would love to just get happy. I want to live, I want a full life. I just wish I knew how.

    My next post will be happy, I promise.

     
    • orthodoxmom3 2:00 am on October 21, 2014 Permalink | Reply

      No you are not an awful person for wanting to tell people. That’s healthy. Your husband’s response is pretty normal to for men, in my experience. I pray you find answers to your health and other considerations in life very soon!

      Like

      • lillbjorne 8:08 pm on October 24, 2014 Permalink | Reply

        Thank-you! I think you are right about it being a difference in the way men and women relate – we need to talk! 🙂

        Liked by 1 person

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