Category Archives: health

Night Tremors and Why Having Fibro Sucks!


I was given the diagnosis of Fibromyalgia in September (2019). Ever since I haven’t been convinced this was right. I still feel that all too often it is a diagnosis thrown out at people when their GP can’t be bothered to work out what’s really wrong. Especially those, like me, who keep pushing for answers. In March the same GP had actually said to me “well you are 50” :O as if that explained everything I was experiencing! I was too shocked that day to respond as I would have wanted to but I did throw that comment back at her in September. She, of course, didn’t recall saying it.

Unlike most I have heard of being diagnosed as having fibro, I wasn’t subjected to numerous tests or referred to anyone else. She just threw Fibromyalgia at me and that was that. She still didn’t refer me to anyone. I pushed to get a referral to occupational health so I could get some mobility aids. The OT has been very helpful and I’m so grateful to her.

But all this time I didn’t believe I had fibro. I knew I had ME (chronis fatigue) and the fatigue and exhaustion have been (and continue to be) my biggest concern. I simply do not have any energy. I cannot stay awake during the day for very long (2 hours tops). And the littlest activity drains me. This is what I had tried to get my GP to understand. Even with decent sleep I never feel rested. I never feel recovered or energized. It sucks!

Yes I get the odd time when simply brushing my left thigh causes terrible burning pain. Yes a lot of my body aches or feels sore on most days. But I thought these things were being caused by other things. Mainly having arthritis and myopathy and neuropathy. Well my GP did say that my arthritis was “very little so shouldn’t be causing so much pain” and the myopathy was “inconclusive due too the specimen being too small”. I pointed out that the arthritis was found 4 years prior and could have gotten worse and that she was the one who told me I had myopathy!!! Ugh! I feel I have to beg for her to listen and understand and BELIEVE me!

I had gotten so mad at one point prior to all this at her attitude (which used to be very good and she trusted what I had to say) and I saw a different doctor. Oh my word was that a mistake! That one dithered about one of my meds and would only give me 2 weeks worth at a time and kept wanting me to have blood tests. Problem was I couldn’t get the tests done before the medicine ran out!

Anyways I had an episode the other night that I have never experienced before in my life. It was scary! As per usual, I had video messaged with my mom then went to bed and read on my kindle for about an hour. My hands were a bit cold but that’s not unusual for me – they are usually cool. I put the book away, turned on some sleep music and switched off my light. I do this every night. I laid there for a while listening with my sleep mask on. Then it began!

It started with a tremor feeling inside me. In my torso. It felt as if every organ was shaking and contracting. It felt like a wave that started low in my torso and increased in intensity as it rose up to heart. My lungs felt contracted as did my heart. I think I held my breath during this as my lungs didn’t expand. Then it stopped. I remember thinking “that was one weirdly strong shiver”. But I wasn’t cold – just my hands.

It began again a few moments later. All my insides shuddering, shaking and contracting in a wave-like manner; growing in intensity once more. I cannot recall how many times this happened but then it got worse. Suddenly it wasn’t just my insides but my arms as well. With the internal wave of tremoring, my hands and arms began shaking uncontrollably. This happened at least twice before my legs also began twitching too. Then my head began to shake!

I thought I was having a “fit” and was so scared! With every pause between these episodes, I tried to think of what might be causing it. It couldn’t be my meds because those haven’t changed in 2 years. I hadn’t eaten anything new. Nothing at all had changed.

By this point, my heart was aching and my head was pounding. I knew my heart had been contracting so figured that was why it felt sore. My head I think was from lack of oxygen since I couldn’t breathe properly during the tremors. It was then I started to feel cold. I was already in my PJs, 2 pairs of socks and under a duvet and a quilt so no reason to be cold. During a pause, I cautiously made my way downstairs. I couldn’t get comfortable in my bed and downstairs would mean I could fill a hot water bottle and make a hot chocolate.

I got to my couch before the next tremor began and waited it out. I then turned up the heating and put the kettle on. Another tremor as I waited for it to boil then made the hot chocolate and filled the bottle. I managed to make it to the couch before it began again. When I could, I took my temperature … 98.6. Nope I didn’t have a fever. I was still trying to figure this thing out. I wanted to find a cause. I tested my blood glucose … a bit high but nothing that would cause all this.

Through all this I did wonder “should I call for help?”. I debated calling 111 for advice. The last time I did they, they sent an ambulance and I ended up in hospital for a week. Nope, I decided that I wasn’t going to do that again. It was not a fun experience.So I decided to wait it out and see what happened with the proviso that should things get worse I would get help.

It finally stopped 45 minutes after it first began. It felt like hours. I felt so drained and was in so much pain from it all. I wanted to go back to bed but I knew I didn’t have the strength to climb the stairs. My heart still felt a bit shaky at times and I kept worrying it would set the whole thing off again. I eventually drifted off huddled in my quilt with the hot water bottle and my Huggle hoodie on (with the hood up!).

I managed about 4 hours before waking with a horrendous headache. All that next day I felt dreadful. I was sore all over from all the twitching, contracting and shaking. My body is not used to that much activity! My headache stayed depsite medicine (though it was bearable with the meds). But I was completely spent and still felt the occasional rumble of my heart. With each one I anticipated everything to kick off but it never did … thankfully.

I did a bit of research and found that tremours are a symptom of fibromaylgia. I say a bit but I really spent hours reading a wide variety of sources before I finally accepted it was true. I did not want this to be the cause. I was still fighting the diagnosis in my head and wanted something to blame; preferably something more tangible. Fibro is such a mysterious illness. So much is not known or understood about it. There seems to be a stigma (maybe only in my head) about it. Like if you say you have it then people don’t take your seriously. Just like with chronic fatigue (ME). People don’t get it. They cannot understand (if they even bother to try). It’s also like the stigma about mental illness. None of these things are recognised as real problems because they are “invisible”.

But now I have to take stock and come to terms with this diagnosis. It’s time to stop fighting the diagnosis and start fighting for a way to cope and manage it. I know it won’t be easy – nothing is these days. Just typing this has sapped my energy and caused my shoulders and hands to be filled with a burning pain. I will need to rest at least twice as long as it took to write this in order to recover and be able to do something else. I’d never wish this on anyone and my sympathy goes out to those who also suffer.


Psaryce x

Looking Out For Number One


The title is my favourite line in the lyrics of Public Image Limited’s Bad Life.

It is also something I struggle with. I always have. Far too often I put other people first. And when I don’t, when I try to what is best for me, what do I get? Grief. I get accused of being inconsiderate, of not thinking about others and of intentionally causing pain.

Bullshit! I never intentionally harm anyone (never have and never will). I am not inconsiderate, in fact I think of other people before myself 99% of the time. Well at least I have always done so in the past. But I am growing and in that process, I must begin to consider what is best for me short-term as well as long-term. And that means I can no longer sit back and just take crap from anyone. Especially not right now.

For the last few weeks, I have been battling stuff from several directions. The biggest thing is I have been trying to cope with my mental health issues while attempting to put together a coherent and concise argument against a decision by the DWP to cut my benefits. I have had no help with this at all. Instead, the person who should have been helping me has been dragging their heels about writing a letter of support to go along with my rebuttal. So not only have I not had the help I needed, I have had extra anxiety over whether or not supporting evidence would be available to submit along with my own.

Speaking of my mental health issues, recently I have been worse than I have ever been since I was 16. And the psychiatrist changed my medication just after Xmas. So bear that in mind as you read this (if you continue to read it). It has caused me to feel even more depressed, caused me to be very sensitive and I cry at the littlest things or become enraged almost instantaneously. This obviously adds to the already, ever-present struggle in my head that I normally face daily as I try to cope with these extreme feelings and at the same time resist reacting to them.

The cut in my PIP has lead to beginning a new battle with the council regarding my housing benefits. Where I live, you only have 2 options to contact the council: 1) by telephone. This is not an option for me as my anxieties preventing me from making this type of phone call and 2) via an online form. I, naturally, chose the latter. The system and the form itself were ridiculously stressful. There had been no forewarning of what detailed information I would need to hand so I had to scramble about in a rush to avoid the thing timing out. It did. 3 times. So I had to input some of the information 4 times in the end. This was bad enough but some fields on the form apparently required you to click an “Add” button even when you had no information to put into that field. The form did not tell you this, nor did the error message that kept popping up and preventing you from continuing to the next section. 2 hours later I was a wreck. I had been in tears while at the same time filled with rage. Tears over the undue stress I was having to face and rage at the council for stopping people from being able to go down to their office and speak to them face-to-face. Not only do I feel more capable of relaying information in a face-to-face situation, this lack of access to a human only serves to highlight just how Americanized the UK is becoming. We are no longer people. We need not have names as we have our National Id Number. And that is all we are now to the powers that be – a number. But that is a topic for another day.

Throughout all this, my central heating stopped working. This caused another battle to come my way as every winter we have lived here, the heating goes out. Every year the plumber my landlord used has said the boiler needs to be replaced. This year he has sent a different company to come and look. The new guy agreed – it needs to go. But whereas the previous plumber was quick to communicate and attend the property, the new guy is not. Over a week went by after his first visit without a word. I call and am told they will call me back. They don’t. Not for several days. Meanwhile, I have come down with a cold/flu bug thing and shivering despite many, many layers of clothing and blankets (not a good place to be when trying to think clearly enough to write to the DWP and navigate silly forms that make no sense). It’s been almost 4 weeks since I first reported the problem and it’s still not resolved.

So, I’m sick, freezing cold, mentally unstable, overwhelmed, trying my best to focus on taking care of practical things that have time limits attached to them (as previously mentioned plus trying to find the rent money & stressing over having to pay it late again) and a friend is giving me grief because I cannot deal with anything more than what is already on my plate. Well I don’t have the head space to deal with that and the way I feel right now, I don’t even want to. I have to finish off this stuff for the DWP and get it to them by Friday or I am screwed financially for certain. I have to build myself up to face opening the 3 letters from the council, which by past experience will only confuse me as they tend to contradict themselves and which will force me into having to find the courage to phone them to find out what they actually mean. I have to phone the plumber yet again to try and find out when I might be able to feel my toes and fingers again (seriously! I have been wearing winter hats & gloves in the house!). I have to try and make time to rest so my body can heal as I have come down with yet another cold/bug in the last 2 days. I have to find a way to build myself to facing my upcoming dental appointment on my own. All while trying not to think about the potential problems I face should I not be successful in getting my PIP restored, should my health decline more and I end up in hospital, should my landlord get fed up with the rent being late, should the food run out before I get paid again, etc.

With all of this going on, I am literally focusing on purely trying my best to get things done and just get through each day. I’m Looking Out For Number One because that is what I need to do right now. 

Psaryce x


2017 – My Year of Getting Kicked


I have been struggling to write my usual end of year review post. This year has been a harsh one but I don’t want my post to be all doom and gloom. I’m trying my best to stay in a fact-based mind set so I can recap with some distance. The year was far too emotional to write about any other way. Distance isn’t easily obtained for me at the moment as I am still reeling from all the BS I’ve dealt with over the past 12 months. Yes it is all past but some of the crap 2017 sent to me has to still be dealt with and so it’s not gone.

The year began with me in low spirits. I didn’t have a roadworthy car so struggled to get out. This affected my therapy sessions as I fund it hard to get there without undue stress, anxiety and panic attacks. Quite early in the year, these sessions abruptly came to and end. It kind of blindsided me and left me feeling abandoned.

Car trouble was a theme of the first half of the year. I bought another one but within 2 weeks it became apparent that the seller had lied to me. It was going to cost far too much money (that I didn’t have) to fix it. I felt such a fool. I was then stuck with 2 cars that weren’t driveable and still stuck in the house.

Then I got ill. Very ill. I thought it was a bug and ignored it for weeks. It came to a point where I knew I needed help. I was at home alone (as usual) thinking I didn’t need to go to hospital. I called NHS advice line. They sent an ambulance as I argued I didn’t need one. The EMTs turned up. They insisted I go to hospital. I’m not that ill I kept saying. I was that ill.  I spent a week in hospital and many weeks at home recovering. I say weeks but I do believe it really took much longer before I was fully healed.

In the spring, I was assigned a care coordinator and a support worker from the community mental health team. This was to help me get out of the house and engaged in activities where I might meet new people and thus improve my mental health. It hasn’t really worked out that way. Life has been throwing too much crap at me and instead of working on “me”, we have been forced to cope with all the rubbish. Two different benefit assessments, countless weeks of exhaustion, anxiety, panic and depression that all stemmed from these two appointments. Followed by a final harsh kick in December when I discovered that I have lost another £246 per calendar month in benefits despite my conditions worsening. FU DWP! From December 2016 to December 2017, I’ve lost in total about £1,000 per month in income. Who the hell can take that kind of hit to their income??

Despite all this, I tried. I tried to go out and do things. I tried to meet new people and make new friends. I tried to take back some control of my life. I tried (very, very hard) to stay out of the Black Void. I was not very successful. Much of this year has been marred by depression, loneliness and anxiety. My overall mental health has declined as each attempt was made and failed. I have become more withdrawn and despondent. The future continues to look very beak to me. Years of constant assessments, financial worries, instability and nothing good to look forward to.

Yes this is a rather glum post but this year has really knocked the stuffing out of me. I feel battered by the assaults and enslaved by circumstances that I do not (at present) have the power to change. Remember, I tried.

For one, I tried doing a volunteer gardening programme. I love gardening and thought it would be ideal for me. It wasn’t. I felt foreign there amongst the people. People who were rude enough to ask “what mental health illness do you have?”. I didn’t really know how to cope with being asked such a question. After being asked that on two separate occasions, I’d had enough. The benefits did not outweigh the negatives.

I tried to get back into Shamanic drumming. I went quite a few times in the summer (after I’d gotten one of the cars repaired) and even bought my own drum. It was good but I think I overdid it. I went to too many events in one week and got overwhelmed. I tried to pace myself after that but it all sort of fizzled out for me.

I attended a few events in the summer and a couple in the fall. Most of them were good but left me drained afterwards and I had to spend a few days recovering. I had braved going to one event on my own by taking the bus as I didn’t want to be stressed about parking in the city center. It was great at first but that good feeling didn’t last. After trying my best avoid it, I was forced to speak to my ex. I didn’t want to but I can’t ignore people that speak directly to me – just not how I was raised. After that I saw 2 further people who I had no desire to acknowledge so I went home. Some might say I gave in but it was the better option for me at the time.

There have been some good times. Despite all this negativity, I won’t let it ruin the fun I have had and the moments I’ve shared with friends. My highlight of the year has to be being brave enough to go to London with the lovely Arianna to see the sexiest Ant to ever exist …


At 63 years old, this man seems timeless. He is physically fit, vocals are perfect, high energy and to watch him live you really wouldn’t think he was more than 40 at the most! The band was ablaze, the walls vibrating and I was in ecstasy. Physically I paid for it for several days after but it was more than worth it. I didn’t want the night to end.

As mentioned, yet another walloping came from the DWP in December without warning. They cut my PIP benefit by £246 per month. A week before Xmas. I totally lost the plot. I went into crisis. I reached out to my support worker. He had to go to a meeting. I told him that I didn’t want to be here anymore (as in I didn’t want to exist). He rushed off to his meeting. He later apologised but for me the damage had been done. I had been sat staring at a blade as I spoke to him. Sat fighting all the immense desires to pick it up and cut. I think shock at being dismissed so casually is all that prevented me from giving in to the urges. Knowing I would be alone most of the holiday periods and that I would be changing medication during that time, he arranged for others to visit in his place – they call it “shared care”. I reiterated my anxieties over answering unknown calls so he agreed they would come to my house on set dates to be arranged.

On Friday 22nd, Chris visited and we made a plan on when I would be visited. The next two visits went fine. Then New Year’s Eve hit. I’d gotten upset in the morning and battled to just hold on until someone turned up. They didn’t. After 6pm, I rang the out-of-hours number. The man I spoke to apologised profusely but couldn’t explain why I’d had no contact. He made a note for someone to visit the following day. New Year’s Day. No one showed. No one attempted to even call. Again. Wednesday 3rd January, I texted Mark, my support worker to let him know the state I was in (I lost the battle with the blade) and what had happened. He replied he’d have them contact me – he’s off ill. Not that the guy can’t get sick but again his tone and words left me feeling fobbed off. No one has come. Still. No shared care visit or call. My “Care Coordinator” hasn’t even bothered to check on me. This has all lead to further depression, anger and isolation. If the people who get paid to pretend they care about you don’t bother then how can one even consider the possibility that others might/do. Trust has gone out of the window as far as the mental health team goes and it’s left me feeling in limbo. And I am stuck here. If I don’t carry on working with them then I have no help at all. This country’s mental health care leaves a lot to be desired.

Although it is now 2018, I view this as all part of last year. It has carried over. So much for cutting ties with 2017. I am being forced by circumstances beyond my control to bring too much rubbish into the new year. If nothing else, I must battled the DWP to restore my benefit monies. These things that, yes I have a choice on how I react and perceive them still have to be dealt with  in order for me to survive. Survival seems to be my word for the last who knows how many years and I am quite fed up with it. I am tired of just existing but no matter what I try, I can’t seem to break free. Perhaps this will be the year that I do. I must carry on clutching at any meagre straw of hope as I have done for several years lest I sink into total oblivion.

Goodbye and good riddance 2017 – I shall not shed a tear for you.


Psaryce x

Healing With A Drum

My Drum

My drum!

I have recently been back to a few drumming healing circles and a medicine wheel after a break of about 2 years. Normally I would be kicking myself for missing out all that time but for once, I’m not. I understand there were circumstances that have prevented me from going – a variety of them to be honest. From not having a car to not being able to face going alone plus a few emotional issues the timing just wasn’t ever right. But lately it has been and I’m happy.

I was sat at a pub with a friend one Friday evening in June and not wanting to go back home to face yet another evening alone. Somewhere in my head I was scrambling for ideas of what we could do. Then I vaguely recalled seeing there was a drumming event on that evening. I mentioned it and we quickly looked it up – yep there was a Medicine Wheel going on that evening. Total spur of the moment, we rushed to her house to get her drum then back to mine for me to change. We got to the event a tad late but nothing had properly started yet so it was okay. We both had a fantastic time that night and couldn’t wait for the next event.

Three weeks later, we went to a drumming healing circle on a Friday once again. This time it was planned but traffic got in the way and we were again a tad bit late. But it was fine – the event organiser is fabulous, laid back and very understanding. Wow what a night. Everyone seemed to be so connected. The energy was so powerful I had to step out a few times before my head exploded! That weekend I felt there’d been a shift in me. I spent Saturday just processing everything that had happened. Lots of rest for me. Sunday I felt energised and finally tackled my messy bedroom – including building a chest of drawers that had been sat waiting for 2 months!

I made a decision. I wanted my own drum. I felt I needed one of my very own. I searched around here, there and everywhere online. I felt drawn to one in particular that was in my price range. I tried to find as much about it as I could. I investigated the differences between natural and synthetic materials. I was nervous because the drum that was calling to me is synthetic. I worried about turning up with a drum not made of an animal hide. But somewhere in me the idea of owning a drum made from a dead animal just didn’t feel right for me. On the plus side, the synthetic wouldn’t be affected by humidity and moisture (something we get a lot of in the UK) but also it would have the same sound no matter where on the surface you hit it. I thought that was good for a beginner as I could just focus on the 1 tone.

Then I looked at the company’s return policy and was encouraged by how they seemed to fully understand if you don’t connect with the drum. I eventually, with the help of a friend, pressed the “Buy” button. Oops! I forgot to add a bag to carry it in! Ugh! So I slightly frantically emailed the company asking how I could get the bag as well without paying for postage again.

The next morning a lovely woman called me and we worked out the best way to add the bag to the order and how I could pay. She was very helpful. The drum arrived the next day. Okay I paid an extra £4 for 1-2 day delivery and I missed it because I wasn’t at home so had to go the next day to collect from the post office. And as I drove home with the box on my passenger seat, I spoke to the drum welcoming it into my life and thanking it for arriving. Do you think that sounds silly? Too bad. I talk to things, plants, animals, all sorts. I even name inanimate objects like the vacuum cleaner and washing machine.

I carefully unwrapped my drum once I got home. I was so excited but took the greatest care with it. The moment of truth had arrived! How would it sound? I wanted a deep bass tone as that is what I felt in my heart would be right for me. I took the banger, held up the drum and struck! Bang! Wow! Amazing! It was precisely the sound I dreamed of and longed for! I banged some more for a while just playing about really. I loved it! I am so glad that I followed my instincts and bought this drum.

Two days later and we are bonding well. I decided to look  into information on birthing your drum. I came across a site that had a lovely write up until she mentioned using a synthetic drum for healing. She claims that they are basically useless for Shamanic healing! I must confess that I was disheartened a bit at first. Had I really just bought a useless drum?

I went and had a bonding session with my drum. I played whatever beat I felt in the moment. It changed during my session. But I connected with the spirit of my drum during that session also. She is female and her name is Daphne. I just know that we are going to be good friends and are going to create lots of healing energy together. To heck with that person on the web saying she’s useless! She’s fabulous to me and that’s all that truly matters.

I am now a tad overly excited about Saturday as we are going to a Medicine Wheel at Avebury! A truly magic place full of energy. I’ve only been once and I went with the wrong person so I am truly looking forward to this event!

Where I go drumming: Chi Coffee

Where I bought my drum: Sacred Essence

I have also received the jingle bell anklets I ordered after going to the Southampton Mela Festival where I drooled over the ones the performers were wearing. I was surprised when they arrived as I only expected 1 but got 2! Double jingle! Woohoo! Here are mine:


My bells!

Now I’m all set for the future of drumming circles be they healing or Medicine Wheel and of course I can play at home whenever I want! Fun times ahead 🙂


Psaryce x


A Week In Hospital


A few weeks ago I become ill. I felt nauseous, had lots of wind and wasn’t able to eat properly. I became worse the 2nd week. I couldn’t eat anything. I kept throwing everything up. I stopped eating. I only drank water for 4 days. My blood sugars were sky high despite taking loads of insulin. I thought it was a bug so didn’t want to waste my GP’s time by making an appointment. I thought it would just pass naturally.

Then one Friday I thought I felt better. That supported my idea that it was just a bug and was passing. Hence I was right not to bother my GP. I ate some jello. That seemed to be okay so 2 hours later I had a bowl of strained chicken broth. The UK version is not what I call chicken broth. The stuff here is thick and has vegetables in it (hence I strained it). It wasn’t nice. I didn’t like it at all. 2 hours later and I was throwing up again.

In the wee hours of Saturday morning, I had a big hypo (hypoglycemic) attack. I woke and found my sheets soaked with sweat. I was shaking and dizzy. I felt so weak. I knew I had to get out of the bed since it was so damp and change my pyjamas. I was alone in the house so couldn’t ask for any help. I somehow managed it all the while feeling like I was about to pass out. I slid my way downstairs to the couch so I could rest there. I waited a bit until I could see properly (my vision was blurry by this time) then I tested my blood sugar levels. 3.7 – far too low.

Again not wanting to waste anyone’s time, instead of calling 999, I dialled 111 to ask for advice from the NHS helpline. After explaining everything I was going through, they called an ambulance to come out to me. I thought it wasn’t necessary but now didn’t have a choice really – they’d already called one to come. In the meantime I had to stumble to the kitchen and eat sugar from the jar – absolutely disgusting! – to try and get my levels up.

When they arrived, they took my blood sugar levels and blood pressure. I have a naturally low blood pressure (90/60 -ish) but they didn’t like it. Also I couldn’t gag enough sugar to get my sugars up to a safe level. So they decided I needed to go to hospital. I didn’t like the idea. I thought it would be a few hours and was worried about how I would get back home.

The ride itself was cold and noisy. The whole ambulance seemed to tremble with each little bump in the road. The “bed” was very uncomfortable and during the ride I became scared of what was going to happen. Yet still I didn’t believe it was that serious.

At the hospital, I began to feel worse. I was exhausted. They took blood tests. They took my temperature – using a weird gun shaped gizmo they shone a purple light on you. They moved me from 1 place to another. I was admitted! I was shocked by that. I still didn’t believe I was that ill. They eventually put me on an IV. They called it a sliding scale for insulin. I had 2 tubes going into the one cannula – 1 for insulin and 1 for glucose (sugar).

Pin cushion!

Left arm – They decided to moved the cannula near my elbow but didn’t take it out straight away!

They brought me food. I ate it (cottage pie) and although I didn’t particularly care for the taste, it was okay. Later they brought me more food (a jacket potato) and I ate that. It was okay too – just a bit on the warm rather than hot side. I was in a room with 3 other women. One was an elderly Scottish woman. She was extremely lonely. She tried to talk to everyone who passed by. She called for the nurse and the HCA (health care assistant) just to talk to someone. She didn’t understand they had other patients to care for. Her son turned up and I heard her saying how lonely she was. She also asked why should she go to a home when she has family? It was so sad and heartbreaking. But I was too ill to be as sympathetic as I could have been. I was waiting for my daughter to visit and overheard the lady talking about me. She said “She’s waiting for someone to come”. I was chilly and put on my dressing gown. She said “She’s going out for a fag”. I lost my patience and swung the curtain far enough closed that she couldn’t see me anymore. I then shamefully stomped out and said “Actually I was waiting for the toilet to be free” and went to the toilet dragging my IV pole with me.

Eventually, my daughter did arrive and brought me things from home I would need. She also bought me a book to read. Her boyfriend complained that she took ages picking it out. It was called The Secrets of Wishtide – A Laetitia Rodd Mystery by Kate Saunders and I thoroughly enjoyed reading it throughout my stay and at home.

Later on, about 8.30pm, the elderly lady began complaining about every little noise. Someone was pushing a noisy cart down the hall and she shouted “Who’s making all that noise?!” Then another sound and she shouted “I’m trying to sleep”. She called the nurse again and complained then asked why the lights weren’t off – she wanted them all off – even the ones above the nurse’s station outside our room. I had been dosing all day so wasn’t really sleepy. I turned my little light on and started reading the book. My vision was still a bit blurry so it was difficult but I managed a few pages before I felt tired again.

Next thing I know, I’m being moved to another ward. WooHoo! No more of the annoying woman. As soon as I arrived, I began throwing up the 2 meals I’d had earlier. Not a good way to make an impression but I couldn’t help it. I was in that ward for 2 days. Most of it is a blurr. I was told I had an infection but they didn’t know where. They started me on an antibiotic via the cannula. They were also coming to test my blood sugars every hour. So I dosed in between those as best I could.

One doctor decided I was dehydrated so she put another IV in my other arm for saline. I was now really hooked up.

Pin cushion!

Right arm – saline for dehydration

It was in the middle of the night so she used my bed lamp to see by. The rest of the room was dark. It was an odd experience.  I was still able to walk (just about) to the toilet and back but every time I did, the IV machine screeched at me until I got back to bed and plugged it back in. I nearly passed out one time trying to go and get back to bed. I literally flopped onto it.

Once a nurse came to help me wash. I fell in love with Hibiscrub – it was the smell that got me. The nurse washed my back and it felt so good. She was firm but not rough and I felt like a little girl being pampered. She left the rest for me to do which I was totally okay with.

Then one doctor seemed to finally listen to what I had been saying and diagnosed a gastric problem. I was started on more meds (for my stomach issues) and felt better (mentally) that things were finally on the right track. However, my haemoglobin level had dropped from 100 to 70 (should be at least 120). That worried them as I hadn’t been bleeding and they couldn’t understand what was causing it to drop so much.

I liked that ward. It was quiet. My bed faced the nurse’s station so I didn’t have anyone lying in a bed staring at me. But then it all changed. I had to have an endoscopy so was moved to an upstairs ward (D7). Again at some ridiculously late hour (all I know is it was dark). I tried my best to sleep and eventually drifted off. Then I was awoken by the lady in the bed to my right shouting for help and Roy. The nurse came eventually and calmed her down. I drifted back off to sleep. I awoke to her shouting again that she needed to go to the toilet. Someone came and said they’d be with her as soon as they could but another patient had fallen and they were busy trying to help them. I felt sorry for her. But she started shouting again when they didn’t get back to her as quickly as she wanted. There was 6 of us in the room and I think she woke all but 1 of us (the lady who snored and gargled in her sleep).

Morning came and I discovered that my bed faced 3 other women. I couldn’t handle it so shut my curtains. One woman was loud and never seemed to shut up.She talked on the phone, talked to the lady next to me who’d been shouting in the night, she talked to a lady 2 beds down from her, her visitors came and she talked with them, she talked to the nurses. She even talked to the shouty lady’s visitors! I put my headphones on and tried to block her out as best I could.

The good thing was I was taken off the IVs and allowed to take my insulin as normal. I began going for walks outside and having a smoke. It was really sunny one day and I enjoyed just sitting outside in it. But the idea of another night of shouting was one I couldn’t handle so I asked my daughter to smuggle in my sleeping pills. They worked a treat! At last I had a decent night’s sleep.

The endoscopy was a terrifying prospect. I was really scared and didn’t want to do it. They offered me sedation so I quickly said “Yes please!”. I was wheeled to the room in my bed. Now what I didn’t like was that they spray the back of your throat with an anesthetic before the sedation. It’s very hard to breathe when your throat is numb. Someone put a small round tube in my mouth – only about 1″ in length so it didn’t go far into my mouth but it was unexpected and made me begin to panic. I was trying to breathe but struggling. Then the sedation kicked in and I was blissfully unaware of anything. When I woke, my throat was a bit sore but nothing too bad. It was over and I was glad.

Unfortunately, the endoscopy showed nothing wrong. Well, fortunately I should say but I was frustrated that they weren’t finding an answer for my illness beyond the infection. My haemoglobin level was still too low so they wouldn’t discharge me. I was grateful for the sleeping pills that night as well.

Then the next day and another blood test. I was eating fine by this point though the menu was dreadful. Not even a hot breakfast! Just cereal and bread (not even toasted!).


Breakfast – um I’ll pass thanks

But I was told if the blood test was good I could go home that day. I was excited but running out of cigarettes so desperate to get the all clear. The result came back and my haemoglobin was up to 80 so headed in the right direction. They determined that I was okay to go home. I was referred to the community diabetic team (whom I have yet to hear from 2 weeks later) for re-training. I had 1 cigarette left so anxiously awaited for my medicines to be given and I could officially leave. It was early evening.

Carrying the bag of stuff my daughter had brought through the hospital was a bit hard. I was still weak and a bit lightheaded. But I managed. I sat outside and smoked my last cigarette then called a taxi to take me home. I had him stop at the shop on the way so in total it cost me £18 to get home. Luckily I had enough to pay for it.

Being home felt odd. I was still weak and lightheaded. I had to rest and recover. For the first week that was all I did – rest. I didn’t even really go online that week which worried a few friends. The first day home I had to go online though – I needed food in the house. I ordered from Tesco as usual but had to pay for delivery on a Saturday (the next day). I felt very dizzy by the time I got the order together and paid for it. But it was worth it to me.

I have been slowly getting my strength back and focusing on managing my diabetes. I’m testing more than usual (which was never!) and trying my best to take the right amount of insulin. I’m also trying to avoid injecting in the same place too often. This is difficult when I can’t inject into my thighs. It feels seriously freaky when I try. I may just be hitting the wrong spot when I do it so may have to learn more about where exactly to inject. It’s definitely something I need to work on.

I have also been teaching myself how to count carbs for each meal and work out how much insulin to take based on that. Back when I was diagnosed, they didn’t do that so I was never taught. It is confusing and I haven’t quite worked it out yet. But I am trying. Having to go into hospital woke me up a bit about my diabetes management. For too long my depression won and I ignored it. I didn’t have the energy for all this complicated stuff and didn’t really care enough about myself to do it properly.

But now I am trying my best and also trying to eat a better diet. I’m back to cooking again instead of relying on ping meals. And not just when my daughter is home but for myself. This morning I made a 2 egg omelette with cheese and fresh spinach and had a small glass of orange juice to wash it down. Now if I could just get this carb counting thing right and quit smoking! It’s too expensive and not good for me but one thing at a time. One thing at a time.


Psaryce x