AWOL in Scottish Meanderings

Yeah - kind of went missing for a while there. Apparently life wasn’t bad enough so I decided to visit hell and it was such fantastic fun I thought I’d stay for a few months!

Ok sarcasm aside - reading back my entry of the 22nd July there were clues to what was going on although I didn’t realise it at the time - namely the fact that I needed increasing amounts of Diazepam to get to anything or get through anything outside of the house. The anxiety symptoms I was experiencing were absolutely through the roof but I couldn’t figure out why - I just knew they were becoming increasingly worse and I seemed to be losing control over it all. My appetite was disappearing fast and I was increasingly nauseous and every time I ventured outside or tried to drive I became ill. There was also this all-encompassing, unexplained fear which seemed to pervade everything and render me completely helpless - I was gradually turning into a terrified wreck.

And then it began to affect sleep. Bear in mind at this time I was sleeping pretty much 8-10 hours a night and often also napping for a good hour around teatime (without that affecting sleep at night) - now suddenly I was only getting 1-2 hours sleep a night and the rest of the time was spent basically fighting my body which appeared to have turned against me. I would wake, heart racing and pounding, sweating profusely, shaking, skin crawling, feeling really sick, needing to pee every hour, with restless legs which would not stay still, absolutely terrified and completely knackered but unable to get back to sleep. If I drifted off, I would be woken with a jolt as though I was being tortured or would have the most awful nightmares and visions so I would lie there absolutely exhausted but unable to sleep and desperately trying anything I could to calm my body down. I’d have to spend hours in that state so that by the time I got up at 8 to feed the cats, I would feel like I’d run a marathon and was hardly able to get down the stairs because I was so weak!

This went on night after night after night and then it began to invade daytime as well. I’d force down something for breakfast, clean out the cat’s litter tray then crawl back into bed, thankful I didn’t have to think about food for at least 4 hours. If I left it longer than that my blood sugar would plummet making me feel even worse. Lunch and tea would be the same performance and eventually I got Nikki to buy me filled rolls from Tesco because I found if I put one in a Tupperware box, I could have bites every now and then and still keep it fairly fresh beside the bed. That’s what I existed on for weeks and at 7 p.m., I would very shakily take the cats downstairs and shut them in for the night. Very often I would have to crawl back upstairs again, all energy and strength spent.

I couldn’t understand what was wrong and was terrified it was the Chronic Fatigue having got worse and I’d have to live like this for the rest of my life. That thought was unbearable and I literally prayed to die over and over and over again.

It got to the point where I was too weak to get downstairs and friends and family were drafted in to get me food or get the cats down to the sitting room for the night but there was no-one who could stay with me and I wasn’t fit to go anywhere. It just wasn’t a sustainable situation. In the beginning Nikki said she would come in twice a week on a Tuesday and Thursday afternoon but she soon got tired of that and Tuesdays became half an hour before Lily went to her swimming lesson while Thursdays became an hour if I was lucky. However she would get me shopping on Thursdays so I desperately needed her. I would have easily got an online shop but both Asda and Tesco have a £40 minimum spend for an online or click and collect delivery and for someone on my own (as well as hardly eating anything!), that was just too much to justify once a week or even once a fortnight. Not to mention the fact that it was beyond me to actually DO an online shop in the first place!

So we soldiered on. Nikki was finding it increasingly hard to cope with the situation overall which, I have to say, came as a shock to me. When I think of the years I spent dealing with her shenanigans in school and the amount of times I had to leave work and come home to try and calm her down from yet another panic attack, I can’t help feeling a bit of resentment that she couldn’t step up for a few weeks when I couldn’t look after myself.

My fabulous best-brother-in-the-world on the other hand was a star. Several times I phoned or texted him in complete despair saying I couldn’t handle another minute of the torture and didn’t know what to do and he would cancel plans, drop everything and drive the 4 hours from his house to mine to sit with me, talk to me, feed me or deal with the cats. He would stay with his son who has a flat here and would even set his phone alarm for every hour during the night, telling me to just text or phone if things got unbearable. Then if he didn’t hear from me he would come over for 8 o’clock and help me with the morning routine. Just knowing he was there was sometimes enough and although things were most definitely unbearable I made sure I didn’t contact him during the night apart from once (luckily he has an enviable ability which allows him to drop off to sleep no matter how many times he’s disturbed!) and instead hung on until I saw him in the morning.

Not once did he ever make me feel I was a nuisance or make me suspect I wasn’t being believed and no matter what I asked him to do it was never too much trouble. He literally spent hours sitting by the bed chatting about anything and everything and making me feel like an actual human being instead of a shadow of my former self. I’ll never be able to repay him for that.

During all this we had home visits from the doctor, phone calls to NHS24, I had to call an ambulance out twice and had one visit to A&E. None of them helped - apart from 2 paramedics at the end of their shift one morning who sat and listened for a good half an hour and were just lovely. Ian and Nikki felt out of their depth so would constantly phone the surgery or make an appointment with my doctor but she had basically written me off because I had CFS. They kept persisting though and in sheer desperation in an effort to be seeing doing something, she started making referrals all over the place! The problem was I couldn’t get anywhere - for instance to any appointments (the visit to A&E was made in my jammies, dressing gown and slippers complete with bed hair! I was so ill I didn’t care) but one or two of them were able to come to the house so gradually I was able to access some support.

The price I had to pay was accepting that I was being treated for a mental health disorder which really jarred at first but then I figured I needed practical help so if that was the only way I was going to get it so be it. I could see that Ian, Nikki and Lorna (my sister) were not going to take my word that the medical fraternity were not going to help us - throughout the whole nightmare, I kept being told by doctors that I needed to increase my anti depressant dose, my beta blocker dose and my Diazepam dose and I refused to comply with any of it so they were getting fed up of me. (Thank God I stuck to my guns though!).

Ian was convinced that if I spoke to various doctors at NHS 24, one of them would magically produce sleeping tablets despite being told by all of them that all they could give me was Diazepam which I already had. I went through several depressing phone calls only to be told the same thing but still he was sure there must be a doctor SOMEWHERE who could help us. That was the only reason I agreed to go up to A&E - in all honesty I wasn’t in any fit state to go anywhere but it was the only way I could get them to believe me - and truth be told I was half hoping I would be carted into hospital because I was really struggling to take care of myself. I can’t tell you the misery of lying in a bed for weeks on end, too ill to wash yourself or even change said bed.

So I agreed to go with them up to A&E one evening. After 4 miserable hours we finally saw someone at 20 past midnight by which time I was actually sitting down on my hunches on the step of the wheelchair I was in, holding my head and shielding my eyes from the fluorescent lights which were boring holes in them, hardly able to speak. The result was the same old story and we drove home despondently with me fervently hoping the whole hellish experience had been worth it. I was so glad when there was no more talk of contacting doctors after that.

But it also changed something else. I was dreading the effect going there might have had in the days following but I realised I didn’t seem to be any worse so I decided from that point on that I’d try and push myself to at least get up and dressed and even if I had to lie on TOP of the bed, psychologically it seemed a step further than IN it! So that’s what I did and from there I started trying to change bedrooms so that at least I’d have a change of scene for the afternoons. Then I started trying to sit up in a chair for part of the day. At first I could only manage half an hour - if that - but now I’m able to last until around 7.30 in the evening, sometimes later.

In the midst of all this I kept thinking “it’s like my body’s going into some sort of withdrawal every night” but that didn’t really make sense in connection with the drugs I was on. However when I looked up withdrawal symptoms, every one listed was what I was experiencing so I had another think. Could it be the Diazepam? But I was only taking it sporadically although I had started to need 5 mgs every 4-5 days right enough. So I did some more research and discovered Diazepam has a very long half-life (the length of time it stays in your body) so it was entirely possible that I was actually withdrawing every few days and that the 5 mgs was enough to keep me stable for that length of time but then I needed more.

But how did that explain the fact that I had started to experience these symptoms all the time? More research discovered that there’s such a thing as interdose withdrawal where a drug can be taken intermittently but can lead to tolerance withdrawal where you begin to need higher doses of the drug but find it doesn’t work. At this point the only thing you can do is start tapering slowly off the drug or, in extreme cases, come off it cold turkey (not recommended).

I figured things couldn’t get any worse than they already were so decided to try and push through the next 4-5 day window and stop altogether which is what I did taking the last one on the 13th of October. And from then on, things have very, very slowly began to get slightly better. Lots of other symptoms are still there but markedly decreased and I’ve had 2 separate days this month where I’ve been able to do fairly ‘normal’ things like get round Asda or get to a friend’s house (being driven there) 12 miles away but I still can’t drive further than round the block and am pretty much stuck in the house most of the time.

About 4 weeks ago I began adding a walk to each day or as many days as I could manage. Again, at first it was only 10 minutes but now it’s around half an hour and half of that is more comfortable - the last half I’m struggling a bit but try to push myself and also to try and go further away from the house if possible although that’s difficult. Agoraphobia is very common with this process and I’m reassured it eventually goes away as time goes on. Same with driving. Losing my independence has been a big blow in this whole thing and I can’t wait to get it back - I tried taking the car a bit further last week and had a major panic attack whilst stuck in a long queue of cars at a roundabout so clearly that was a bridge too far at this point. I need to be more patient. My appetite is a lot better now (my good friend Janice has been popping half a dozen small frozen meal portions of home cooked food into me every 2 or 3 weeks which has been a tremendous help) and I'm getting around 5 hours of sleep a night - broken sleep but sleep nevertheless.

Not being able to interact properly with Lily and Lilah has been absolute torture. Those of you who play a large part in your grandchildren’s lives will know what I mean. There were days when I could hardly speak to them never mind anything else and sometimes I couldn’t even wave goodbye at the window because it was just too much to get up and sit there. For months they had to come upstairs and play in the bedrooms which drove Nikki bananas (my bedroom’s really small!) but I was so glad I’d kept a settee in the spare bedroom which is bigger - it was ideal for visitors - they could sit there while I could lie on the spare bed. Nowadays I can sit downstairs when they come and have had times where I’ve been able to play a game with the girls properly and just ‘be Granny’ again and I can’t tell you the joy that brings me!

But I couldn’t be Mum to Nikki and I knew she missed that - the relationship has definitely been affected and I really hope we can get back on track once I’m a bit better. In some ways it’s been a good thing because she tended to rely on me quite a lot before as a handy babysitter etc. She’s had to now get a babysitter from the village and pay her and has also managed to get Joel to take the girls every second weekend from 3 on a Saturday to 3 on the Sunday. That’s helped a lot giving her some chill out time as well as enabled her to be able to get out with her friends on occasion.

Something that might help us is the fact that I’ve had an Occupational Therapist from the Adult Mental Health Team in to assess me and I think there are moves afoot to get someone once a week who could help with the shopping. That would take the strain of that away from Nikki and she can then just come in for a normal visit at the weekend. She’s stopped Tuesdays now and just comes in on Thursdays but that means I don’t get to see Lily at all as she’s in school when Nikki and Lilah come on a Thursday so I’m going to push those weekend visits. I was terrified Lily would start to forget me or just get fed up with the fact I couldn't do stuff with her but she keeps drawing me heaps of pictures which does my heart so much good because she’s doing them at home not while she’s at my house which means she must be thinking of me when I’m not there.

One more thing and then I’ll leave you in peace. I know some of you on here take a benzodiazepine regularly and have done for some time (I had a lot of private notes to one of my previous entries on Diazepam). It is not my intention to make you feel bad about this or to scare you unnecessarily. Many people taper off these drugs successfully with relatively few problems but there are a large number who experience what I’m going through - a very large number - and this fact is not widely recognised by the medical profession. Therefore I just want you to be aware of it so that if it happens to you or someone you know, I’ll be here to point you in the right direction for online support and information if necessary. I would have been the first to sing the praises of Diazepam when it worked - and in fact did in this very diary I believe - and I know many, many people are temporarily helped by drugs such as these but it's still a fact that some doctors (especially in the USA) give them out far too easily and ignore the drastic effect they can have when taken for a long time.

Put very simply, it's all to do with the chemicals in the brain - GABA and Glutamate. We need these to be equally balanced for many things to work in our body and these drugs interfere with that bigtime. Once they're withdrawn the GABA receptors have then stopped working along with other things like serotonin and dopamine, causing a HUGE amount of symptoms to occur and rendering the victim pretty much helpless. For quite some time.

This state carries on long after the drug has left the body because the brain has to kind of 'reset' itself and learn how to upregulate the GABA receptors naturally again. Through weeks and months the body has to rebuild millions of neurons, change pathways, rebuild GABA, downregulate Glutamate, rebuild serotonin, rebuild dopamine, rebuild norepinephrine. And ALL the enzymes and hormones that need to be made are attempting to be made while all this is going on. It's kind of like completely rebuilding a major structure while hundreds of people are coming and going in the building and trying to work there at the same time.

But all the symptoms mean healing is going on and in time, there comes what's called a 'window'. That's when you begin to feel slightly better and start to do 'normal' things again. This is balanced out by 'waves', where you feel worse and symptoms are more acute. It feels like you've regressed somewhat when in reality, the brain is just sorting everything out and eventually, there will start to be more windows than waves and you'll realise you're a good bit better than you were several months previously.

The average time for this process is around 14 months so I’ve a long way to go yet but I’m prepared to stick it out for as long as it takes. The only thing which totally puts me off is that I’m going to have to do it twice over again as I have to get off the anti-depressant I’m on which is a nasty one apparently and also Subutex - again a rough withdrawal process by all accounts. However I’ll be tapering them so I’m really hoping that that will make the experience a somewhat more bearable one. I think the only way I can get through it all is to see it as a sort of five-year plan by which time I would hope to be off everything.

The irony is not lost on me that I’m in this position as a result of walking into the doctor’s surgery 3 years ago to ask for a referral for help to stop taking the measly 5 codeine tablets a day which I had become dependent on. If I’d continued with my own taper and just stuck it out, I wouldn’t be in this mess at all! And yes I know I was diagnosed with chronic fatigue syndrome but I’m even questioning that now because when I first became ill, all the symptoms I had were EXACTLY the same as those of 2 or 3 months ago and at the time, I was 2 weeks into a very drastic taper of the Subutex drug! So maybe it was purely and simply withdrawal then as well.

Time will tell.

Oh yeah and in the middle of all that, this lump of fluff was diagnosed with heart failure!!