The Difference Between Living and Existing in Scottish Meanderings

Revised: 05/17/2017 12:46 p.m.

  • May 16, 2017, 6 p.m.
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Wednesday, 17th May, 2017

It may sound from some of my recent entries that I’m getting better with a bit more energy and I have to admit I was beginning to think that myself a couple of weeks ago. Certainly my calendar was starting to look a little healthier that it did in February. It was the end of January that things went pear-shaped so that month was still fairly sociable: (crosses usually mean whatever it is has had to be cancelled).


Then it all went tits up.


But by April there’s a noticeable improvement and things were starting to pick up again.


However I was reminded recently that some things are still a problem - travelling for instance - due in part to these distressing attacks I was getting. The thought of having one of them when I’m miles from home is quite frightening because I hadn’t found anything which controls them apart from getting home and complete rest. Well that’s not strictly true - Diazepam helps tremendously but the doctor won’t prescribe it for me (the last one I asked anyway) so I’m using out of date ones which I was given 2 years ago when first ill and as there’s not many of them left I have to use them sparingly.

I was supremely disappointed when I realised the time was drawing near for my lovely friend from the States, Beth, to visit the UK with her friend, Kim. Some of you will know her as Edna Million on here. I knew a while back that she was planning a trip and had every intention of arranging to go down to the south of England and meet them. I’ve met them once before in 2010 on their first trip over here but it was such a long way that we could only manage an evening together. However that was fine and I was delighted that they really took to the country and wanted to come back which they did eventually with Beth’s husband. I couldn’t get away to meet them that time so was determined to make it this time but that was before I had the relapse.

I kept putting off contacting her hoping I’d be well enough to go but finally I had to admit defeat and say no which really upset me. And it upsets me even more because if I had the right medication I could have probably managed it. It literally is the difference between having a life and having to hide away in misery. And yesterday just confirmed that for me.

The weekend before last I got a thing. I’ve no idea what this thing was - I just knew I lost my appetite, had a permanent headache and kept sleeping for Scotland. No sniffly nose, no coughing, no infection, no nothing - just something very wrong. That took a few days to go away then I realised I was left with this hellish anxiety state - all the symptoms of a severe panic attack - pounding heart, feeling sick, shaky legs, dizzy and awful surges of adrenaline coursing through my body - made worse if I was going into a situation where I couldn’t escape or had to sit calmly - the counselling for instance. You don’t really want your counsellor sitting looking like she’s about to pass out any second!

And yes if you remember correctly I had mentioned about having these attacks anyway but I was sometimes able to push through them although it was distinctly frightening and extremely uncomfortable. Well after the thing, it somehow upped the ante with the attacks - I literally could hardly get out of the house and unfortunately that week happened to have an appointment I had to get to every single day. I usually try to avoid that because of the pacing I have to do but it’s not always possible. On the Wednesday I had an appointment with the doctor I’m registered with, Dr. Okpo (not the one I usually see), as she was very ‘pro drugs’ last time I spoke to her and wanted me to stay on all the drugs I was prescribed and not try to come off them. I therefore thought I might have more of a chance of her agreeing to give me more Diazepam and had decided to begin by innocently asking her if it was okay to take drugs which were several months out of date because I had realised the Diazepam I was taking had an expiry date of February 2017 (which was true). I thought she was bound to answer no to that and also realise that if I was still taking the ones I’d been prescribed TWO years ago then there’s no way I’m addicted to them and she might end up writing a prescription for more without me actually having to ask for them.

However I couldn’t get through the surgery door. The anxiety was just through the roof that day and, not wanting to waste any of the tablets, I was trying to deal with it myself but patently not succeeding. Finally, in desperation, I took 4 mgs (a low dose) but that was only half an hour before the appointment. I drove up to the surgery feeling worse and worse. Parked the car and stood outside trying to cool myself down as much as possible, pacing up and down the car park, willing the medication to work and desperately trying not to think what this meant for the future if I couldn’t even get to a doctor’s appointment for Pete’s sake. And failed on all counts.

That was a really miserable day. I ended up writing a letter to Dr. Okpo explaining why I didn’t appear and how I really wasn’t coping with the anxiety at all and she tried to phone me this morning but, not recognising the number, I didn’t answer! However, having listened to her voicemail and realising who it was, I tried to phone back but it was one of those numbers you can’t call back which was handy (not) and she didn’t leave me another one so presumably I just have to call the surgery and then play phone tag which I hate. Her message just said to give her a ring or make another appointment and she was happy to discuss things with me so I’ve booked another appointment for next Wednesday but will try to get hold of her before that because it would really help if I could speak to her on the phone instead.

So yesterday I had a hair appointment at 12.30 which was the first ‘proper’ appointment this week and I was literally terrified I wasn’t going to make it. I tried desperately not to think about it the night before but we all know how that goes and I ended up not getting to sleep until well after 4 a.m. and then going into an extremely disturbed, restless, half-awake, half-asleep state, finally getting up at 8.30 shattered. The drug I take daily, Subutex, is great for helping me to ‘come to’ eventually and by 10.30 I was starting to feel a little more human but the anxiety was definitely hyping up. So I made an Executive Decision and took 4 mgs of Diazepam about an hour and a half before the appointment.

Honest to God I just can’t tell you what a difference that made! Everything calmed down within the hour and I was able to get to the appointment without any problem. To be able to sit and chat with my hairdresser and fully participate in the conversation, laugh and joke about life in general and be relaxed and calm instead of fighting to breathe properly, smile though I’m dying inside and desperately try not to panic further, just made me so happy I was almost buzzing! I felt so good afterwards that I decided to treat myself to a pot of Earl Grey in Debenhams with my lunch - something I haven’t been able to do in a long, long time.


And after that I had a delightful browse for a couple of hours and further treated myself to a rather nice vase which caught my eye and fits perfectly in a corner of my kitchen worktop.


By the time I got back to the car, it was 4 o’clock and I was pretty tired. But not exhausted. There’s a difference. The Writing Group meeting was that night but I had completely dismissed it because I was so focussed on just being able to get to the hair appointment, and because I’d been ill, I also hadn’t managed to write anything for the topic which was very loose this month - anything with the word ‘May’ in it - about May, taking place in May, someone called May - literally anything with any connection to May. (And we only had one story about Theresa May out of the 12 of us!) For some reason I just can’t ‘allow’ myself to go if I haven’t written anything - there’s some crazy moral compass in me that doesn’t think I have a right to be there if I haven’t made the effort to produce something. Yet it doesn’t bother me in the slightest if anyone else turns up without anything to read out. Crazy.

Got home at 4.30 and by 6 p.m. I’d eaten a couple of boiled eggs and had them with some beans, resurrected a story I’d written before, stuck an addition of a baby being born in May into it, shortened it a bit, printed it off and was on the road to the Group, an hour’s drive away. By then my sleepless night was really making itself felt and the familiar symptoms were starting up again but I’d taken an extra Subutex and once that kicked in I was absolutely fine. An hour later the beautiful hotel we hold our meetings in hove into view -


and it was such a lovely night I took a closer photo once I parked the car.


It’s just as beautiful inside as out and because one of our number is good friends with the owner, they let us have the room for free which makes a big difference as we have no funds coming in apart from our own. We always buy a hot chocolate or tea/coffee at the end of the evening to try and repay them a little for that.

And once more, I was just delighted to be able to participate in that lovely group and hear all the varying efforts being read out. I’ve been a member of several writing groups over the years but this one has the loveliest people by far and is also the best group in terms of providing constructive criticism. And - bonus - they thought my story would be perfect for the People’s Friend so I’ve promised to send it off and see how I get on - I’ll keep you updated.

I got home around 11 completely knackered - but in a good way. It may seem a very uneventful day to a lot of you but to me it was absolute gold. And more than that, it’s taken away the very real fear I had about getting to counselling tomorrow. Now that I know I have something I can take which controls these awful symptoms, the fear is greatly reduced and it all becomes manageable - although with this particular client’s track record, there’s every likelihood she’ll cancel tomorrow anyway. I obviously had to cancel the appointment last week and the Agency were mortified because apparently they had been very firm with her about cancelling again - and now here they were having to phone her and tell her the counsellor had cancelled when there was every chance she might have actually made it in!! Them’s the breaks unfortunately.

So wish me luck with the doctor - she may be the deciding factor between living and existing right now.


Last updated January 07, 2018


^..^Kat May 17, 2017

Sounds like a wonderful day, I'm so glad you were able to experience such a good one.

Marg ^..^Kat ⋅ May 18, 2017

Me too. It was an oasis of calm in a turbulent week!

Deleted user May 17, 2017

Crossing fingers and toes she gives you the prescription for Valium.

Marg Deleted user ⋅ May 18, 2017

Thank you!

Deleted user Marg ⋅ May 18, 2017

:-)

Sabrina-Belle May 17, 2017

I can really empathise with your situation. I think you know that I was on Lorazepam for many years. It began for anxiety but then seemed to help my migraine so I stayed on it. The annoying thing is that, in the beginning, I was taking it like you only when I needed it but was told firmly by a doctor that I needed to take it every day for it to help me and was reassured that it was not addictive! That was in the late 70s. Of course I did become addicted but was only on 1mg a day and thought better to just leave it now but my GP 2 years ago insisted I come off. I've manage to reduce to .25mg but I am much more stressed now and my blood pressure it higher. The point is I wouldn't have become addicted if I hadn't listened to that doctor.
I do hope your doctor will give you some Diazepam, as long as you only take it now and then yo will be OK and, as you say, it's the difference between living and existing.
What a lovely hotel your writing group meet in. I went to a new one in Hereford a couple of weeks back. Lovely people but it was in a tiny room with no window, no break for coffee and they just read their work and got complimented, no real constuctive criticism. I don't think I'm going again.

Marg Sabrina-Belle ⋅ May 18, 2017

Oh that's such a shame the writing group didn't work out - I was thinking about you when I was writing about mine! Are there others in your area you could get to? I tried a few years ago and wasn't happy either so trundled on on my own instead and then found this one through a writing workshop in the library.

My doctor also prescribed the Diazepam 3 times a day but I knew enough about addiction by then to know that that was the road to hell! That's why I saved it for when the anxiety was going through the roof only but sometimes just knowing it was there was enough to enable me to push through an attack. I actually had one doctor say to me when I first became ill "I'm prescribing 5 mgs Diazepam to be taken 3 times a day (I'd already been prescribed 2mgs ones) but you'll only get it for 3 weeks because it's addictive". Well that's helpful then. Not.

ODSago May 17, 2017

ODSago May 17, 2017

Oh, I had no idea you were fighting all of this and I do hope you can get the right medication; our granddaughter Holly has anxiety and several other problems and after years went for therapy, both in her community and in her university...after several tries the right meds have introduced us to the girl she was born to be...absolutely delightful, resourceful and compliant with other's needs. Then her dad went and on the same medicine his anxieties have greatly reduced. Now, let us know how the next days unfold.

I loved your day! I am interested in a writing group in my new city, too. You remind me that I should call and ask if I can visit for the first time tomorrow. Thank you.

I have never had an attack like the one you described and my heart goes out to you. Life is unfair. Do you meditate? That has been so helpful to me, and I don't do it often enough but when I do, I am so much stronger than before. You have the capability to enjoy life, so many interests and talents...I see you working through this with medication and moving forward.

Marg ODSago ⋅ May 18, 2017

Yes I've used meditation and mindfulness to good effect for 'normal' anxiety. Thing is, this isn't situational anxiety - it's connected to the Chronic Fatigue Syndrome and is something to do with inflammation of the body. I had it very badly when I first became ill and then as I gradually improved, it decreased, so it's a result of the relapse I had back in February which I'm still recovering from.

ODSago Marg ⋅ May 18, 2017

I better understand your plight. Thank you. I didn't mean meditation would cure such acute anxiety, etc. but rather that having dropped into meditational levels of brain waves for years, it can simply offer me in a good enough day a better day... or give me (raw grief) a quicker return to stability...as for example...in the grocery store when something triggered my grief. (I had no idea that could happen!) I could stabilize and at least move on. Thus, I am grateful for that skill. Understandably.

My best.

ODSago May 17, 2017

Oh that beauty of a hotel where you meet! Wow!

Marg ODSago ⋅ May 18, 2017

I know - it's amazing - and stunning inside. We're so lucky to be able to meet there and for free!

ODSago Marg ⋅ May 19, 2017

I went to a writing group at the senior center here, after reading about yours.

Marg ODSago ⋅ May 20, 2017

Did you? Oh that's great - how did you get on? Did you enjoy it?

ODSago Marg ⋅ May 20, 2017

I liked it enough to return. I don't write prose often but am going to work through a family story that I started years ago...and this will present a weekly opportunity to keep my skills keen. I met these people: The woman I wrote here about, a spy at 15, is the facilitator, there are two women writing short stories in English, which is their second language; and two men--one read, and he's writing his life story; the other didn't read but gave a robust and demanding critical review on small details of the other man's work (!)...a editor who writes her commentary and rarely reads because she is so self-critical; and the facilitator who writes exotic travel reviews for top line magazines. What a set of people to have crossed paths with. They read six pages for critic. It's ok to attend and not read.

Marg ODSago ⋅ May 21, 2017

Goodness that's an eclectic bunch right enough! :) We had a guy who loved to give critical reviews on each person's work as well (he took thorough notes as he was listening) but wasn't so great at receiving that same constructive criticism for his own work!

TruNorth May 18, 2017

Its awful that you suffer these symptoms. I hope that you get a doctor who can help you.

Marg TruNorth ⋅ May 19, 2017

Thank you!

NorthernSeeker May 18, 2017

You have such a big price to pay for getting on with the maintenance aspects of life. You argue and fight with yourself...must be exhausting. I certainly do wish you well with your doctor appointment. Congrats on that short story!

Marg NorthernSeeker ⋅ May 19, 2017

Thank you!

Anaiss May 18, 2017

I had no idea you were going through this horrible time either. I hope you are able to get the medication you need -- the happy day and evening you described are so different from the other reclusive, anxiety-ridden days. What a BEAUTIFUL hotel that is!

Marg Anaiss ⋅ May 19, 2017

It's amazing - and splendid inside. I should take some photos sometime.

Deleted user May 19, 2017

Hi :). Do you know, taking the medication you need allows you to live life in a joyful way. Without it, it's almost as if you are paralyzed with anxiety and fear. Definitely not a way to live. Sigh. I know that addiction to the medication is a concern but what other options are there I wonder? Are there any other options? Something must be done so that you can live your life to the fullest. Between your fatigue and anxiety/panic, well I'm just so very sorry you are experiencing this.

Marg Deleted user ⋅ May 19, 2017

Thank you K - I'm just hoping I can convince the doc I'm seeing next Wednesday to give me it as I know it works. Hopefully she'll see that if I still have some left from 2 years ago then there's no danger of addiction.

Deleted user Marg ⋅ May 19, 2017

Hi Marg - I just noticed we are both the same age (58 years old). :)

Marg Deleted user ⋅ May 20, 2017

We are indeed! I'll be 59 in September - the big SIX OH fast approaching! :D

Deleted user Marg ⋅ May 20, 2017

I'll be 59 in October. :).

Marg Deleted user ⋅ May 21, 2017

Oh we're not that far apart then!

Lady of the Bann May 21, 2017

I would love to find a writing group. And hate to feel anxiety like that. When I had my lung problem a few years ago, the consultant said he would get doc to prescribe prednisone (steroid) which would make a big difference. I knew I really needed them but it was difficult to get the doc to give me a prescription I needed before my holiday. I have also found that if you don't take something regularly then it's difficult to get a repeat prescription without seeing the doctor again, which is almost impossible to do.

Marg Lady of the Bann ⋅ May 23, 2017

It's so maddening that people abusing the system have made it hard for those who genuinely need those drugs.

ConnieK May 24, 2017

I hope you can get the help you need for the anxiety. Glad you were able to attend your writing workshop, though. That is probably good for your soul. :)

Marg ConnieK ⋅ May 25, 2017

It most certainly is. The drive there almost kills me physically (an hour there and back) but it's often well worth it for what it does to me mentally!

Deleted user May 25, 2017

How have you been feeling Marg? Have you been sleeping a lot?

Marg Deleted user ⋅ May 26, 2017

I've had a rough week truth be told Kerry - have needed Diazepam twice to get to stuff and it leaves me groggy and headachey next day as it takes ages to leave the system. However I've made it to everything this week (had something on every day) - sometimes by the skin of my teeth - but a migraine this morning meant I was too wobbly to get to the counselling agency for a group supervision meeting. That was a disappointment but I want to be well for tomorrow night as Nikki's sleeping over (without the kids)! Thanks for asking - I appreciate it :)

Deleted user Marg ⋅ May 26, 2017

I'm sorry to learn you've been having a rough time. I truly am. Thank you so much for the update. I'm happy that Nikki will be spending the night with you so the two of you can spend time together. I take it Nikki is your daughter, correct? The mother of your two adorable granddaughters?

Marg Deleted user ⋅ May 27, 2017

Yes that's right😊

Deleted user Marg ⋅ May 27, 2017

Do you have other children besides Nikki?

Marg Deleted user ⋅ May 27, 2017

Nope - she's my only one! One was enough lol!

Deleted user Marg ⋅ May 27, 2017

I only have one child too, my daughter Katie. How old is Nikki?

Marg Deleted user ⋅ May 27, 2017

She's 29 - be 30 next year. Gosh that makes me feel really old! :D

Deleted user Marg ⋅ May 27, 2017

My daughter is 32. I'm feeling old too. :)

Exhumed By Scrying Eyes June 04, 2017

I fathom the difference between living and existing extremely well. For the bulk of my life I have just been existing... sick most of the time, dealing with major depression; I've been homeless for over 4 years of my life (non-consecutively).

For me, living has come in flashes... chasing a severe storm, photographing / filming it, it's momentary slice of heaven, living, breathing, enjoying. When I can work it's similar, I have so much responsibility, no time to be depressed, I'm living in that moment.

But, 95% of the time, it's just existing. Today was so bad, I had to take a Tramadol (and I hate taking meds). I usually suffer as much as I can to prevent taking a painkiller, and then when I do have to take it, it works for 2 hours and that's it.

I'm sorry you're going through so much, I know this entry isn't recent, but I hope the Dr visit went well and that there's been some improvement in how you're feeling.

Marg Exhumed By Scrying Eyes ⋅ June 05, 2017

Thank you. Unfortunately things seem to have got worse - it's so frustrating to be so exhausted that I can't do research to try to find out what's going on. Of course it would help if the medical profession would do their job then I wouldn't have to!

Don't you envy people for whom 'living' has just been something that happens to them every day? It makes me angry sometimes. Especially when I know I don't often 'look' sick. I suppose that makes us stronger for having that to overcome as well as everything else but - I dunno - somehow that just doesn't make me feel any better!

Exhumed By Scrying Eyes Marg ⋅ June 05, 2017

We have very different illnesses, but with similarities. Mine is invisible as well and yes, I do envy 'normal'. I just want to work and have a life.

The medical field has failed me repeatedly, I'm still desperately trying to see a homeoppathist, in fact I have a phone consultation with one this afternoon. I can't afford to see her, but we'll see where the conversation takes us.

Is there anything I can do in relation to research that may be able to help you?

Marg Exhumed By Scrying Eyes ⋅ June 05, 2017

That is an incredibly kind offer and one which I very much appreciate! At present I'm trying to wade through some info on adrenal fatigue and how to treat it as it matches a lot of my symptoms but can apparently be completely missed by GPs. I found a website by a Dr. Lam which had a heap of information but which I got a bit bogged down in! I'm also trying to work my way through a very good forum on Chronic Fatigue called Phoenix Rising - they have a wealth of information and data on current research there but it's almost like I don't know where to start - it's so confusing!

If you have time to help me out that would be fantastic but please don't take on the task if it's too much because you have enough to deal with over there I know. And the very best of luck with your telephone appointment this afternoon!

Exhumed By Scrying Eyes Marg ⋅ June 05, 2017

Ok, I was able to do a couple hours of research on your behalf. If you think you may have chronic fatigue syndrome or adrenal fatigue, here are a few things you may want to look into.

As you know, I believe in homeopathy, I didn't before I tried it, and it literally saved my life. That said, I can't promise it will work for everyone or for every condition. From my experiences however, I never get side effects with homeopathy and that alone makes it worth a try or two.

This website is a solid hit discussing not only variations of CFS, but some of the more common and effective remedies for each one based on auxiliary symptoms such as anxiety or muscular pain etc...

https://www.drhomeo.com/chronic-fatigue-syndrome/chronic-fatigue-and-extreme-tiredness-making-life-miserable-try-homeopathy/

The next link is specific to women with adrenal fatigue. Some info obviously overlaps as they're not too dissimilar, but based on how you feel, if you're leaning one way more than another, than this may be more useful to you. Inspect them both and see for yourself.

http://www.homeopathyforwomen.org/adrenal_fatigue.htm

I hope some of this info helps. I can only provide you with information so you don't have to look for it, but you need to research the info on the pages to make the best decisions regarding your health, be it advice or a remedy. I know how useless Dr's can be, sometimes we just need to take matters into our own hands and care for ourselves because someone has to.

All the best!

Marg Exhumed By Scrying Eyes ⋅ June 06, 2017

Thank you so so much - this helps tremendously. I was becoming overwhelmed trying to look for the right stuff but not even knowing what to look for! I'll give that info a look over in the coming week hopefully - my first priority is getting the necessary info off for a referral to a local trust which apparently deals with chronic conditions - and as far as I know they take a holistic approach so I would imagine homeopathy would be included in that. It's only taken me A WEEK to get one letter written and 4 pages copied at the local library - today I've earmarked for completing the patient info form then hopefully that's it. It's ridiculous how much time everything's taking. Thanks again for this and for doing it so quickly - please don't take offense if I don't get back to you about it for a while - everything is taking forever at the moment and I'm trying to find a way of calming my body down enough in order to carry on counselling - my one last link to feeling 'useful'! I fear that may be next to go though.

Exhumed By Scrying Eyes Marg ⋅ June 06, 2017

You're welcome. Take your time, it's important to be thorough. I'm glad that I could be helpful.

Oh, that phone interview with the homeopathist yesterday went well. I have an appt for the 21st of this month! Now I just have to figure out how I'm going to pay for it. :/ I have 15 days to figure it out.

Marg Exhumed By Scrying Eyes ⋅ June 07, 2017

I'm glad although sad money comes into it. I really wish I could help you out - I would do in a flash if I was still working. How much does it cost? And would one appointment be enough? Would they let you do some sort of instalment plan or something?

Exhumed By Scrying Eyes Marg ⋅ June 07, 2017

I appreciate the gesture. I'm a giver, I love helping others, I do a lot of charity and volunteer work. It's pains me greatly to be on the other end, and to be honest, (though not currently) I've been homeless for over 4 years of my life non-consecutively and lived under the poverty level all of my adult life, but I've never asked for a penny from anyone, always just fought through, worked and somehow survived.

I don't like that even my ability to care for myself has been stripped away. It will require multiple visits and I've already been told that I need to pay upfront on the 21st.

Monetarily speaking, I only need $600 for this first visit including treatment, but closer to $6,000 for the full treatment which includes multiple visits both physical and phone/skype and all the herbs / medicines that will be prescribed; a year or more's worth altogether. If you compare that to the chemo my gastroenterologist wants me on at $14,000 a month, it doesn't sound so bad. :/

Marg Exhumed By Scrying Eyes ⋅ June 09, 2017

Well relatively speaking I suppose but it still sounds horrific to me! Just to even have to THINK about money when you're ill is abhorrent to me or no sorry - not to have the choice rather - makes me appreciate our National Health Service over here.

Exhumed By Scrying Eyes Marg ⋅ June 09, 2017

I agree, it's all I can think about. How am I going to afford this med, this Dr. visit etc... stress I can't afford, that's for sure (no pun intended).

edna million June 14, 2017

I was SO sorry you weren't able to make it! We'll be back, but it's sad to have to wait a few more years (unless of course we hit some magic jackpot - then we'll be back very soon!) I hope you're able to get a refill of the Diazepam. It sounds like the relief is worth the worry about becoming addicted to it. And I'd think that's not a huge worry since you are only taking it occasionally now. I can't imagine how frustrating all this is for you, going from being so active to having to be terribly careful about what and how much you do.

Marg edna million ⋅ June 16, 2017

Great to hear you'll be back in a few years' time - hopefully I'll have turned a corner then!

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