Living Life Small in Scottish Meanderings

Revised: 06/12/2017 2:04 p.m.

  • June 12, 2017, midnight
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I've had a pretty rough month.

Turns out I haven't got the medication sussed after all.

The doc did prescribe me 14 Diazepam 2mg tablets and made it clear I wouldn't get any more. Given that I was taking 2 and sometimes 3 before going anywhere that obviously wasn't enough - even if I was just using them for counselling and nothing else. So I did a lot of research and discovered I could buy them online from what seemed to be a reputable vendor - which was actually a lot easier than I thought it would be - I was imagining having to try and get into the Dark Web and all sorts but I found a site set up for folk similar to myself - who need that sort of medication but can't get it prescribed. As well as all sorts of discussion around medication they have reviews of vendors and post results of what's been bought, how much it was, how long it took to come and how genuine it was. And one vendor seemed to stand out. I had several e-mail exchanges with him and felt I could trust him.

I had to set up a Moneygram account though to make the transaction and because I was struggling so much just to get through each day so had to concentrate on everyday living instead, I never got round to it. In the meantime I had two occasions where the Diazepam didn't seem to work. One of them was a counselling session and the hardest 50 minutes I've had to endure in a long time. Just the fear when I sat down of realising the symptoms hadn't died down and not knowing how bad they would get was enough to initiate panic but then when I made some input into the session, they all flared up again. That had never happened before and really threw me.

I was washing the client's cup up afterwards and the kitchen is opposite the manager's office. She always has the door open and saw me so asked how I was. She could see by my face that things weren't good so asked me in and we had a chat. Christine has known me for years and was instrumental in getting me back into counselling - she was involved in my original training in the year 2000 and then was the one who suggested the training course I took last year. She was also one of the trainers delivering it. She's so understanding and totally gets that I'm desperately trying to hang onto this no matter the sacrifice will be and wants to support me in that. But that whole 50 minutes had felt like some sort of endurance test and I wasn't sure I could go through another session like it. She said not to make any decisions that day and see how I was the following week but the following week I wasn't any better and I ended up cancelling the second session. I realised I could have tried a higher dose of Diazepam but that actually doesn't sit right with me. Lots of people take far higher daily doses of that drug or some other anti-anxiety drug but taking 8 mgs of Diazepam just to get me out of the door just made me recoil and I wasn't prepared to do it.

It also hadn't worked when I had gone to Inverness - or at least it had worked slightly - but not enough to let me enjoy the day - and it made me incredibly sleepy when I was driving - the last 20 miles of that journey on the way up were a nightmare and I had to stop and walk around a couple of times to try and keep awake. That's never happened before either.

And yet I look perfectly okay in this photo (I'm second on the left from the bottom of the table).


This is the maddening thing. I never look ill. But that whole day was awful from start to finish and although I was glad that I managed up to see them because that's probably the last time Margaret will be over in Scotland, I'm not sure if I paid too heavy a price for it. I was in bed the whole of the next day, fit for nothing. And the dreadful anxiety symptoms persisted for another 2 weeks afterwards although of course I have no evidence to say driving up there made anything any worse. (Ian & Margaret happened to be through visiting Matt that day so left in their car 10 minutes after I did to give me a 'back-up' should it be needed on the journey!).

It was lovely to see the relationship between Jamie and his aunt (Jamie is sitting next to me and Margaret (Canadian Margaret) is right across the table from him) - there was a lot of banter between the two of them and he took great care of her throughout the whole trip. At home (in Canada), Margaret was well looked after by her aunt Anne (never married or had children) up until she died and then others in the family took over after that and she stays in a kind of supported living sort of place which allows her to still have some independence. She's 76 now but was looking not too different from when she was over to Scotland in the mid-seventies! And she was so loving - very taken with wee Jessie (being held by her Dad at the top of the table) - couldn't take her eyes off her and kept giving me a hug saying she was so glad to see me. I wasn't entirely sure she knew exactly who I was but she just seemed so delighted to be able to see so many family while they were here. It was just a 2 week trip and fairly well spaced out - any longer would have been too much for her - but at each point - London, Glasgow, Inverness, there was a cousin ready and waiting to take them in and show them round or ferry them up to more family.

And they were delighted to be able to go even further up north to see where their original descendants had lived. My Dad's mum and dad lived in a little place called Tain in Easter Ross, on what's called the Black Isle in the north of Scotland, given that name because of its predominantly dark, brooding image and also because snow doesn't lie there in winter so it always retains the dark colour. It's full of tiny little villages and it's where my Dad and his brothers and sisters were brought up. For years this was the only way to get across to it -


but now there's a spanking new bridge which has made a huge difference to the tourist industry up there. As well as employment.


Lorna, my sister, knows all the particular houses where everyone lived and has all the local knowledge so her and Jane went off up with Jamie & Margaret after we had our meal (about a half hour/hour's drive so we were hoping Margaret would have a nap in the car on the way to keep her going). When Granda (Dad's dad) was a young man, before he met Granny, him and his three brothers emigrated over to Canada but Granda came back - not sure why (he probably fell out with someone - he was as thrawn as they come!) - and created his brood in Scotland. Another brother came back to England but two remained in Canada and so we have quite a few relatives over there. I've only been over once back in the eighties but Jane (bottom right in the restaurant photo) - my cousin - has been really good at updating a very comprehensive family tree so that we can keep track of who's who. Goodness knows where she gets the time as she manages Capercaillie, a Scottish traditional band and also Eddi Reader, a traditional Scottish singer/songwriter, full time, as well as rents out two flats in Glasgow so has all the upkeep of that plus her own flat. Mind you she's not married, with no partner and no kids so maybe that explains it!

Anyway I'm glad I got up there but not sure it did me any good long-term.

Last week and this things have been slightly better - and the really distressing symptoms seem to have died down a little so I'm managing on an extra Subutex tablet if I have to go anywhere and haven't needed any Diazepam since the 1st June. However I have no idea why the month was so bad and I have no idea why last week was any better - I have absolutely no clue how my body is functioning these days and that's frightening. I'm sure diet probably plays a part but have no idea what food - if anything - is making things better or worse. And when the exhaustion takes over it's so hard to eat properly. I can't think of anything healthy I can have in the bedroom apart from cereal bars - I even wondered about those meal replacement drinks - Ensure/Complan and the like but I'd like to try and avoid that if I can. Plus I presume you need a kettle of water to pour onto the mixture?

I've ordered B12 oil as I've heard a deficiency of that can cause very low energy and fatigue so it's worth trying. There's very definitely something wrong - that much I'm sure of and have been sure of for a long time. And I've discovered a place a few miles away which takes a holistic approach to health and one of the things they deal with is chronic conditions. So they would go down the homeopathy route I think - I'm hoping that means they might be well experienced in deficiencies and what vitamins and supplements to take to correct them. A referral from the doctor gets you half a dozen appointments with them initially - thereafter you have to pay but the charges aren't extortionate and at this point I would pay anything to get some of my life back.

One of the keys I think is to get properly tested. The basic blood tests the doctors do only tests for certain things and I never know exactly what they show - you're only told 'nothing has shown up' - I would rather know what was tested and what the actual results were. I've been trying to research adrenal fatigue because it seems to fit my symptoms almost to a tee - and apparently it's something easily missed by GPs and often confused with other illnesses - and testing for cortisol levels (which I think is the main test) is not covered in basic tests and needs to be done over a period of time as levels change so much during the course of a day. So there are usually four different tests done at four different times of the day. But I need someone who knows what they're doing to talk to about this. What worries me is that it has 4 stages but if it's left untreated, by the time you get to the fourth stage, it's basically too late and treatment doesn't work because the body is so depleted by that time. And also when my symptoms were so awful that horrible month, I couldn't get anywhere to be able to be treated so that frightened me as well. So many people who are in more severe stages of this illness have just been abandoned - sometimes even by family and friends - left to stare at walls from their beds, unable even to read because they're so exhausted. What chance do they have?

Nikki sent me this photo of the girls in matching outfits to try to cheer me up. It did bring a smile to my face I have to admit.


I discovered she had a Netflix account but didn't use it very much so wondered if I could tap into it. Found out I could if we upgraded her to the next plan so as it was only £1.50 extra, I just set up a Standing Order to pay that into her account each month then I'll monitor usage and see how much I'm actually using it. As you can imagine, being stuck in bed so much, I watch the iPad A LOT but there are lots of sites where you can watch stuff free if you know how to navigate them and can put up with occasional downtime or buffering so that's why I've never joined Amazon or Netflix before.

I've just finished a series called 'The Keepers' - about the cover up involved in the murder of Cathy Cesnik and 2 of her high school students (now in their sixties) who have tirelessly and continuously persisted in trying to get to the bottom of it. Can totally recommend it but it involves sexual abuse just to warn you in case that's a trigger for anyone. Anyway a lot of it centres on the slowly-being-recovered memories of one of the abuse survivors and when asked how it affects her life now, she answered "I live life small." So much was encapsulated in those 4 words and the phrase really stuck with me - presumably because it struck a chord with my own situation. Not for one second am I connecting what I've been through to what she's been through - God no - but I could very much connect with that description. That is exactly how I am living my life right now - small. Not that I ever lived life particularly large or anything but I'll settle for the medium I had previously :)

And there are bright spots in all this misery - family times which are sustaining me - so I will write about them in the coming weeks and try and be more positive. I know I feel worse today because I had a sleepless night last night (since the illness hit I've had occasional nights of completely missed sleep - not one wink) and next door are having fences/decking built so workmen have been banging away since 8 o'clock this morning (radio blaring and drills drilling) meaning I can't catch up with naps so that's not helping because I was hoping to go and watch Lily at her swimming lesson at 5 p.m.

And I knew I had a horrible job to do today so that was depressing me as well but it's now done. I e-mailed Christine (counselling agency manager) to say I need to get my client re-allocated again because I just can't see how I can commit to 10 weeks of sessions with all this rubbish going on, never knowing how I'm going to be from one day to the next. The fact I seem a bit better this week makes me tempted to keep going but I could easily have another month like the one just past and I'd rather the client got mucked about at the beginning than be half-way through and have to do it because I have to keep cancelling or something. That just felt like another nail in the coffin though.

I hate this illness right now. Absolutely hate it. But hate is an energy so maybe I can use it to try to get to the bottom of what's going on.

Last updated January 07, 2018


blackpropaganda June 12, 2017

I do hope you can get some tests that can get to the bottom - or someway to the bottom - of the problem(s). It is amazing you have been able to keep going at all.
Of course, even for the most optimistic of us political news is just totally depressing!!!!

Marg blackpropaganda ⋅ June 15, 2017

That's very true!

Deleted user June 12, 2017

I have been feeling much better the last week and a half . Of course it's hot and sunny which makes a huge difference with my spine but I also started a good multivitamin , d3, and B complex . I have been concentrating on eating more fruits and vegetables even though I can still barely taste them . It seems to be making a difference . Hoping you start having some very good days ! Hugs !

Marg Deleted user ⋅ June 15, 2017

I'm so glad you're feeling better! I found D3 really seemed to help and I've been trying to eat more fruit and veg but sometimes I have no energy to get downstairs to get them - must be horrible not being able to taste much though.

Deleted user Marg ⋅ June 15, 2017

It definitely curbs a person's interest in eating. I am lucky to desire to eat once a day and then I usually only get a few bites down because I can't taste it :-( unless I can load it with ketchup, vinegar , hot sauce , or salt :-( . Things like baked potatoes , strawberries, steak, fried or baked chicken , salad, etc.. have no taste at all unless I douse them in something. I do still get hungry though so I force myself to eat at times .

Marg Deleted user ⋅ June 16, 2017

I wonder if there's something else going on that's affecting your sensitivity to taste? Might be worth investigating.

Deleted user Marg ⋅ June 16, 2017

Might be but I am so out of sorts with doctors / costs / that I am avoiding them. I know it's not a wise course of action but it's just ridiculous to spend a fortune just to get the most basic kind of medical care. And I am still paying off bills for the wreck that wiped out my spine so that is always in the back of my mind .:-( The hospitals have been patient about payment but I have been paying significant amounts for six years and I never received any huge amount of care ; just diagnostics and PT . Then they wrote my spine off and said there was nothing to be done . For that I have paid 150.00 every month for six years so far and it's still not paid off ! I am so fortunate my Dad paid for all the specialists I saw out west at the Mayo Clinic in Phoenix. I can not imagine what that cost ; only to be told the same thing : no surgery will help and it's a miracle I can walk . And it may not last . :-(

Marg Deleted user ⋅ June 16, 2017

That's just dreadful Jinn - it's disgusting actually. Bad enough having to pay for treatment anyway but when it hasn't even helped then to be discarded as though you're not worth bothering about - you must feel so bitter. I'm not surprised you avoid doctors now - no-one could blame you!

Deleted user June 12, 2017

Your grandchildren are so cute ! And even though you felt horrible you looked great in the family photo ...

Marg Deleted user ⋅ June 15, 2017

Thank you :)

ODSago June 12, 2017

Love the photos, and you do look just splendid in that family photo...grandchildren are growing up and remaining darling as before, for sure. Sorry for your struggles, and I don't understand why you cannot ask your doctor explicitly for B12 testing -- see earlier private note on another's message. I know nothing about meds but can share that my daughter Karen's taking B12 shots changed her ability to work in the best of ways. Love the family stories about your ancestors. The round robin of having fellow family members from afar visit and going to see where your family came from. Love that idea. Also, moved by the" living small" comment. One doesn't want to do that until one has to, of course. I am living smaller than I did, and while I am taking that limited life in my arms and doing with it what I can...I'd like to be living larger myself. Living small. Two words that say so much. Wishing you a better week this week.

Marg ODSago ⋅ June 15, 2017

Thanks! Yes I loved the phrase - it just says so much in so few words.

^..^Kat June 12, 2017

I like your two pictures, those little girls are just gorgeous.

Marg ^..^Kat ⋅ June 15, 2017

Thanks!

mcbee June 12, 2017

I just finished watching "The Keepers" and thought it was excellent, but so sad. So much pain that could have been avoided.

Marg mcbee ⋅ June 15, 2017

Wasn't there just - it was horrific. So many lives affected when they knew about it already and could have done something. I get it was different times but still ...... thank God for those 2 women's perseverance otherwise the whole thing might never have come to light.

SilverBlue June 12, 2017

I have been unwell in a very similar way - two things helped me - one is amitriptyline 30mg at night before bed, and the other is something called The Lightening Process. It's a course based on NLP and aims to "switch off" an overactive adrenal response. It sounds ridiculous in many ways but it worked for me (not instant, but a big improvement and then my confidence in my body grew as I was able to do more and this reduced my anxiety 100 fold) I went from not being able to walk around tesco to working four days a week. It is expensive though and this was almost nine years ago so may have changed since then!

Marg SilverBlue ⋅ June 15, 2017

I think I've heard about that in passing - how did you find out about it? Did you have to pay? I can totally relate to being able to do more and reducing general anxiety/depression - the less I can do, the more worthless I feel although the anxiety I had doesn't seem to connect to that - it seems to relate to the body pushing itself constantly. Something about a poor stress response or something?

Marg SilverBlue ⋅ June 15, 2017

Sorry - ignore second question - just realised you'd already answered it! Would be interested to know how you went about getting it though.

SilverBlue Marg ⋅ June 15, 2017

http://lightningprocess.com/lp-register/

I heard about it from a relative who had also been very badly affected by CFS/ME. Fortunately there was a practitioner about 15 mile away and my husband drove me there and back each day (three day process with follow ups afterwards).

She runs her own version of it now as she found the "official" version was becoming prohibitively expensive (I paid around £500, hate to think what it may cost now!)

Marg SilverBlue ⋅ June 16, 2017

Thanks very much for this!

TruNorth June 12, 2017

Darling little girls!
How frustrating this condition is. Wish there was something out there that could really fix it.

Marg TruNorth ⋅ June 15, 2017

Yep - will keep plugging away though - hopefully one day this will all just be a nasty memory!

Deleted user June 13, 2017

Is the fatigue you suffer with connected to your anxiety? I'm just wondering if one affects the other. What you are living with when it comes to your health is extremely difficult. The ill way that you feel influences every single aspect of your life. I'm so sorry. (((Hugs)))

Marg Deleted user ⋅ June 15, 2017

Thanks WR! The fatigue comes from chronic fatigue syndrome which is just really a name for a whole set of symptoms connected with unexplained pain and exhaustion. The anxiety seems to be connected to the body pushing itself when it has no resources to do so - natural sources of energy don't seem to be working so it looks everywhere else for it and the body gets depleted as a result. Something recently made me worse and therefore the anxiety was pretty much constant whereas before it only used to be really bad when I over-exerted myself (which could happen at any time) - so in effect I was what they call 'crashing' all the time. I just have no clue what's causing it and what makes it worse or better.

Exhumed By Scrying Eyes June 13, 2017

I need to get meds that way. Actually, what I need is to get a prescription for Low Dose Naltrexone. I have a few other other friends that have a similar illness to me and their Dr's are prescribing it, but no one here will prescribe it for me.

Good that you're using the most out of whatever energy you can muster, keep that up!

NorthernSeeker June 14, 2017

I can really relate to feeling bad but not showing it on the outside. If you had a broken arm people could see it and it would be very validating. A friend of mine had to go on a steroid for an eye tumour and that kicked out her adrenal glands. She gained a lot of weight but she's still functional...pretty busy, in fact. You make the best of things and try to get what you can out of a day. I think people with similar difficulties would find you to be quite inspiring.

Marg NorthernSeeker ⋅ June 15, 2017

That's lovely of you to say but I don't feel very inspirational at the moment :) But yes you've got my point exactly - no-one sees the exhausting effort that goes into before and after these times I show up and I wish there was something visible - somehow it seems to be more acceptable if you can produce concrete evidence.

edna million June 14, 2017

The homeopathic doctor sounds like a great plan - I think they'd be a lot more likely to figure out what is going on and be able to help, especially as the regular doctors aren't being very helpful. You do look great in the family photo- which I know is a mixed blessing since people expect you to be fine when you look fine! And the little girls are adorable as ever.

Marg edna million ⋅ June 15, 2017

I really really hope so Beth - I'm sick of living like this. And missing out on stuff. Will keep everything crossed I get somewhere at Camphill :)

Sabrina-Belle June 26, 2017

I'm very late commenting on this post because I was away for a week and then not too well and not online much so still catching up. I can really empathise with your Diazepam situation. I am still taking Lorazepam but have got down to 1/4 mg which is equal to 2.5 mgs Diazepam. The doctor rang me recently about coming off altogether but I managed to make him see it is not the time. I seemed to adjust to the reductions until I got down this low and now I notice I am so much more stressed about everything, I want to just stick where I am for a while. I looked online at one point but couldn't find anywhere that didn't need a prescription, but at the moment my dr is still prescribing them.

I have found homeopaths helpful in the past with a number of things so I do hope you get some relief soon.

I love the photo of the girls, they are delightful!

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