Well My Gall Bladder Is Out

Well it's been a little while since my last post and a few things have happened.

To begin I spent about a week and a half zoning out on tramadols. My gall bladder pain got much worse and I was having to take these regularly. Trouble is they were either knocking me out or keeping me wide awake, and making me itch constantly. I was scratching at myself in my sleep, the worst night being when the itch was around my eyes. I spent a whole night scratching and pulling at my eyelids and lashes.

Last Monday I went to the hospital for a physio appointment and had a small amount of acupuncture around my coccyx. It was needed, I had stopped taking my Naproxen ready for my operation and was starting to get inflammation. Since the acupuncture I've had no problems with my back despite not going back on the Naproxen post-op. I have another session in just over a week providing I am feeling well enough.

The biggest thing to happen is that I went under the knife to have my gall bladder removed. I went in for this on Wednesday and was first in. I went down to theatre at 9am and returned to the ward at 11.45am. My experience in the hospital was not the best.

Firstly while being anaesthetised there was some debate/argument going on between the staff. There appeared to be some confusion over a machine that was in theatre but that should have been under my trolley. Also there was a bit of a debate over whether I was the patient they should have in there. Not very comforting to hear as I was drifting off into oblivion.

When I awoke the pain was horrendous. I couldn't open my eyes, they were probably still taped over, but I had the worst pain in my stomach. I vaguely remember kicking out in pain and being told more morphine was on its way. Eventually the pain dulled and I managed to ask if I could keep my stones before being told no and grumbling my way into a morphine induced sleep. UPDATE: They then tried to shake me out of this because after internal surgery I had to get out of one bed and into another. I vaguely remember them shouting at me to get across the bed but I was drifting in and out from the morphine and couldn't move for the pain. I had people pulling and shoving me and I have no idea how but eventually I made it into the other bed. I only remembered this on the day I went in for my knee surgery, as I didn't have to swap beds, they just wheeled me back to my room. How is it after such a major surgery (and to me it is pretty major, they are in there removing an organ from my body which is attached to my liver and arteries are cut etc) I am expected to climb from bed to bed when I'm heavily doped up on morphine and anaesthesia?

I spent a lot of the day knocked out. I was given dry toast and after one bite ended up choking as my throat was so dry. I couldn't sit myself up and despite two nurses seeing me struggling no one came to help me so I had to carry on choking until I managed to reach for some water and force it down. After that I was given a yogurt which took me about two hours to eat as I kept falling asleep with it. Luckily it was a very thick yogurt or I would have been wearing it. I was given a tablet for the pain but was told not to take it until I had finished the yogurt. Because it had been sat there a while one of the nurses came over and binned it. Then a short while later when I asked for pain relief was shouted at for not taking the tablet earlier and told I might not be able to have any more. I'm quite sure if I couldn't eat a yogurt I wouldn't have been able to get a tablet the size of a golf ball down my throat. They told me I needed to stop sleeping but I tried to explain the morphine was still having an effect on me, they couldn't understand this as I'd had it hours ago but they clearly weren't taking my M.E. into consideration which I did try to explain but it fell on deaf ears.

Later on another really nice nurse came over to try and see if I could get out of bed. I couldn't even sit myself up and once I finally got to my feet I was so shaky and light headed and couldn't hold myself up. I had never felt so ill in my life. My blood pressure was low and I was told I wouldn't be able to go home that day. I got back into bed and she brought me a sandwich which I couldn't eat, again because my throat felt like I'd consumed the entire Sahara Desert's sand.

I was seen by a doctor and after visiting was moved to another ward. The overnight nurse was very helpful and when my blood pressure kept dropping made me cups of tea and made sure I always had water. I was managing to drag myself out of bed by this point but it would take about 20 minutes each time and I was in so much pain.

The next day Nurse Useless, Even More Useless, and How The Fuck Did You Become A Nurse were on duty. They failed to provide me with any pain medication, ignored me when I couldn't get out of bed and was crying in agony and didn't give me any information about if I would be staying in or going home. My mum phoned who was told I might be coming home in the afternoon. I was seen briefly by a doctor but all other patients who had undergone the same thing were seen for about 15 minutes each, had an explanation of their operation, what would happen next, given aftercare information. I was simply told "it went well". I wasn't told what meds to take, given any info about driving, how to look after myself and my dressings, when I could shower. I just had to go off what I overheard the doctors say to the other patients.

At one time some fruitcake who was opposite me started pushing her table around the ward with a hot brew on, all three nurses had disappeared off the ward leaving the cleaner and other patients to deal with the situation.

The H.T.F.D.Y.B.A.N. Nurse then came over and started shouting at me to get out of bed and walk up and down the ward four times. Never mind the fact I'd been in and out of bed all morning trying to go to the loo. So I managed to walk the ward once, but I'd been on dihydrocodeines the night before which knock me out and was limping from my knee. And limping and being unable to stand up straight because your stomach muscles have been cut through isn't the easiest of things. And on top of that I have my M.E. So I crawled back into bed and drifted off. I was in and out of sleep all morning and felt so out of it. When my mum turned up to take me home I was so drowsy and in so much pain. My mum asked the nurse should I be in so much pain, to which she dozily replied, "no not really, should I get you some medication to help you?". Well yes, I have had an operation. Surely I should have some pain relief? Then my mum wanted to get me a wheelchair to get me to the car, so she asked the H.T.F.D.Y.B.A.N. Nurse who made a nasty comment about how I should be walking about and how I should have done four laps of the ward and wouldn't do it. My mum was not impressed and put her in her place but she would not help her find a chair. I just said "fuck her" and somehow managed to drag myself out to the car as there were no chairs to be found. I felt like I was going to collapse with every step and was so exhausted by the time I got to the car and when I got home I just sobbed with exhaustion and pain. UPDATE: After my minor knee surgery I was given a wheelchair and wheeled to the car by a member of the nursing staff even though I had been given crutches. Again, I feel after a bigger operation and with the pain and difficulties I was having I should have had a lot more help than I received.

I feel like I was totally ignored and treated like shit by some of the hospital staff. I think because I was younger I was given limited information. All of the other patients who had the same operation were older and were given lots more info, treated with respect and weren't bullied to get out of bed or move around. Yes I was sleeping a lot more than them but I have M.E. which means I have chronic fatigue on a normal day, nevermind when I've had an operation and been doped up on various opiates. Regardless of the amount I was sleeping I was still in and out of bed between this to use the toilet. I felt like noone was taking into account the fact that my operation was not my only health issue.

Overall I felt totally ignored and disrespected, they forgot to give me pain medication twice while I was in there, refused me medication once on the grounds that I'd been too ill to take it earlier, provided me no information about how my operation had gone or what had been wrong with my gall bladder (yet they told some of the other patients this information), given me no aftercare or medication advice, ignored me when I needed help (I'm sure they aren't meant to allow you to choke in their "care"). I feel like if I had been about 20 years older none of this would have been the case.

Since I've left hospital I'm making slow but steady progress. I'm still in a lot of pain, drowsy from the meds and finding it hard to move around. But I am more mobile, I managed to have a shower yesterday and go downstairs for a short time. I did over-do things though and ended up feeling quite ill afterwards. My wounds are still sore, three are healing nicely and are just a little bruised and tender, the one above my belly button is the largest and messiest. It's the one causing me most pain but hopefully it will heal soon.

So that's where I am at so far. I'm aware that I need to allow myself to recover properly from this before attempting to get back to normal activities as if I don't my M.E. could suffer long term. It really takes it out of you but I'm sure if I get a good balance of rest and activity I will be able to keep things under control.

xx

Feeling More Positive Now, But Need My Bed!

So I just got back from physio and it went surprisingly well.

My physiotherapist, Peter, was such a lovely chap. He asked questions, listened to everything I had to say and was very understanding. He spent quite a long time testing out my movement, flexibility, reflexes etc and made me feel very at ease.

So the basic outcome is that there is nothing nasty going on, all of my nerves are working fine etc etc. My coccyx is very predominant, probably caused by my injury as a child, and that is one of the reasons I am experiencing pain. Nothing can be done about this, however they can treat the muscles around the area which haven't much strength and are quite painful. So I'm going to be going for acupuncture around that area of my back to treat the pain and tension in the muscles and hydrotherapy to strengthen them. He is also going to look at treating my general pain caused by the M.E. He showed me the pool and said it would only be a few weeks before I can begin the treatment. Because of my operations this will probably end up being longer but he assured me it wouldn't be an issue to work my treatment around this.

I'm booked in to see him in 10 days time, 2 days before my gall bladder is due to come out. He has given me a basic home exercise to do and I feel a lot more positive about the whole thing. I'm not expecting miracles from this but small changes can often make a big difference.

On a side note I'm feeling rather drowsy right now. I've had a banging headache since yesterday, my gall bladder has been a little painful. I've taken Buscopan and Tramadol for the gall bladder pain and paracetamol for my headache, as well as the usual Pregabalin and Naproxen. The trouble is I've been taking the Tramadol for a few days now as my gall bladder has been flaring up a lot and I think one or two doses are ok but when I take them for a few days straight they really start to knock me out, especially seeing as I'm taking other medications along side them. I feel nauseous and exhausted and I have a feeling that as soon as this post is done with I will be out for the count. I've nearly fallen asleep into my laptop a few times now. I think I best be off to bed. Apologies if this was a bit all over the place, I hope it makes some sort of sense...

xx

Physio

Today I have physio at the hospital.

I have no idea why I am going to physio. I was originally referred because the nurse at my M.E. clinic had advised I ask my doctor about hydrotherapy as a form of pain relief for both my M.E. related pain and an old injury on my coccyx (tailbone) which has been extremely painful and caused a lot of discomfort since I was 11. It has become much worse with the onset of my M.E.

So after my referral I was set to a local private physiotherapist for six weeks. It was such a waste of time. The first was just an assessment where I explained what pain I was experiencing. Following that four weeks of treatment. I'm not sure what she was treating me for as she didn't look at my coccyx or lower back once. She seemed to concentrate around the shoulders a lot, maybe because I mentioned I was getting shoulder pain because of my gall bladder, but that wasn't what I was going there for and that will be resolved when they remove it anyway. I'm still going to be left with a bad back after that. I couldn't do a lot of the small exercises I was given to do at home because of my knee and gall bladder pain and she didn't seem to be interested in working around that.

The final appointment was such a waste of time. It took five minutes of my 30 minute allocated time slot, was with a different physiotherapist who just asked me to fill in a form about my pain scale following treatment. Well seeing as I wasn't really treated, the same as before I'd say.

So I'm not feeling too optimistic about today.

For one, if this is the start of a course of treatment there really is no point because I'm going to have surgery in two weeks so won't be able to attend. I did make a call to the hospital and ask this question but was told by a very rude receptionist to come anyway. I said I was booked in to see a particular therapist as stated on my letter and was practically screamed at that there is no such therapist and she is fed up of people asking for this lady who doesn't work there, so I won't be seeing this person and she is sick of telling people this. Seriously if this is the case take it up with the people who write the letters, there is no need to be nasty to the patients.

Also I'm not really sure what I'm being referred for. I guess I will find out. I certainly wasn't going to ask the guard dog on reception.

xx

M.E. & My Decline

I suppose I should probably write something about how my M.E. came about, how I was diagnosed and the struggles I had with it. Some of these years have been a bit of a blur and have only really made sense when I have looked back upon my medical records. I've had to do this as I have had to plan out a cover letter in preparation for applying for student finance for a second time. I will speak about that in a future post.

All of what I am about to talk about it very personal to me. I don't think even some of my closest friends know everything about me because in truth a lot of the people I have met over the years haven't understood enough to stick around. If you have M.E. or another disability you may understand what I mean.

Prior to getting ill life had been relatively normal. I'd been to school and done well in my GCSEs, gone on to college and completed a BTEC National Diploma in Graphic Design and an A-Level in Photography. I'd then taken a year out and worked 4-5 days a week, 9 hours a day in a shop that sold bath bombs and soaps, a little along the lines of Lush. Then I headed off to university in September 2005 in the hope to become a Graphic Designer.

University was not as I expected. I was living away from home but luckily for only about an hour away as I was only in uni 2 hours a week. The level of tuition wasn't enough for a full time course and I felt such a failure for it not working out. By March 2006 I was in discussions with another university to re-start the course in the following September. All was looking up.

In April 2006 a family member passed away very suddenly, then another in May from a long term illness. These were my first experiences with losing someone and it hit me hard. Following this there were also problems within my extended family and this went on for about 2 years before things finally calmed down which I also let this affect me massively. I'm a big thinker and all I could do was try and think of a way to make everything right again, which obviously I couldn't.

I started at my new university in the September of 2006 and it was much better than my previous place of study in terms of the course. However I was struggling with symptoms of low mood, swollen glands, tiredness and IBS flareups as well as still struggling with the ongoing family drama. After numerous visits to my doctor I was prescribed anti-depressants and only just managed to scrape through my first year of college by using the extenuating circumstances procedure.

I needed to boost my income so started a part time job and during 2007-2008 and my second year at my new university I continued to seek answers from my doctor. I had blood test after blood test and all came back clear so was often sent away with no answers. They continued to medicate me for depression but by now it was more down to the constant exhaustion that I was feeling low rather than anything else. I was struggling in college and in everyday life. Our house was burgled one evening while we were sleeping and this led to poor sleep for a few months which only fuelled my fatigue. I was getting nowhere with the doctors, failing uni and feeling like I didn't know where to turn. I failed my year at college but it was agreed I could repeat it the following year.

My doctors had suggested exercise might help and I had also wanted to lose weight so I started going to the local gym about 5 times a week. At first I really enjoyed it and my energy levels did improve slightly and so did my mood. But as the weeks went on I felt more and more tired, more sore, pain became a big issue and my glands swelled up really badly. I was constantly being sick and was struggling to keep food down because it just made me feel exhausted to eat. I went to see the nurse about my swollen glands and she asked me had I scratched my head or had nits. I just looked at her like she had lost her marbles. Scratching my head can make my glands swell so much I had hard lumps in my neck and make me so sick I can't eat? Okay then.

I went back to university in the September (2008) but struggled from the start so I went back to my doctors and really pushed them for answers. After seeing a different doctor in April 2009 the possibility of me having ME/CFS was suggested and I was referred to the hospital for further tests. By this time I was so ill I could rarely attend uni, was struggling to attend work (I lost count of the number of times I had "flu", how do you tell them you can't come to work because you are too tired??) and had constant fatigue and pain. I didn't complete my year at uni for a second time but extenuating circumstances gave me an extended deadline of May the following year. I planned to get a diagnosis, get treatment and get on with life again.

I started tests at the hospital during the summer which continued into start of the academic year. I was now in bed for about 18 of the 24 hours in a day with severe fatigue, often sleeping, only getting out of bed to eat or wash, and pain was also a big issue. On the 28th October 2009 I was officially diagnosed with ME/CFS. I thought great, now I can get better. I went away from the hospital expecting further letters about treatment or information about the condition. Nothing. I started to research further myself and the outlook seemed bleak. I was still no further forward in completing uni, work were unhappy with my attendance and I didn't really even know who I was anymore or what I wanted from life. It was like I was trapped in a glass box and everything I had ever wanted was on the outside taunting me. Friends were disappearing, or shouting at me for being flaky when I couldn't follow through with out plans to meet up. I was desperate for help. I went to my doctor begging for help who told me there was a management programme but it would be a long wait. She referred me and I finally decided enough was enough with university. I would never be able to complete this course, I was too ill. This was me at my lowest point.

I can't really include much more here because in all honesty I don't remember much of these years. They are such a blur of exhaustion and sleep. I had my good times, I did manage to feel well enough at times to do some of the social stuff I enjoyed like gigs and festivals and days out with friends (mostly in the earlier years) but what people didn't see was the days/weeks after I would spend suffering from them.

I will do another post at some point on how I got from there to where I am now. I hope this insight was useful to some of you. Thank you for taking the time out to read this xx

Operation Update

So I'm due to have my knee operation next week (16th April), but there are concerns over the state of my gall bladder and whether or not my operation can go ahead.

Today I have been told I can have my gall bladder operation on the 24th April but this would mean postponing my knee operation to who knows when. I am currently waiting on someone from the hospital calling me back regarding this (my ops are being done by two different hospitals). I can only have the operations at least 6 weeks apart, so do I stick with my existing plans of having my knee done and wait another 6 weeks for my gall bladder or do I have the gall bladder out and wonder when I am going to get my knee sorted?

What would you do?

If I go down the gall bladder route things with work become a little more problematic. I'm down to work a bank holiday which I would miss and then would lose a day's holiday later in the year. Doesn't sound much but when I have two operations scheduled and don't get SSP these bank holiday shifts are really going to make a difference when it comes to money.

I have until tomorrow to make my decision. I'm not good with decisions =/

xx

Stuck Between a Rock & a Hard Place

I can't sleep. 

It's been a bit of an up and down couple of weeks. I worked additional hours during the week leading up to Easter and the Easter weekend and even though I'm on holiday from work at the moment I still seem to have so much to do. I've been having to meet up with friends and attend appointments because I'm scheduled for an operation on my knee in just over a week and will be unable to do much for about 2-3 weeks after that so I'm cramming everything in. It's exhausting.

After meeting up with friends on Friday evening and Saturday I've spent most of today sleeping. This could explain why I can't sleep now. The thing is it wasn't even a mad weekend, very little alcohol was consumed and I wouldn't even say I had any late nights. But this morning I only awoke at 11am, lacked energy all day and by 4pm I was unable to stay awake. I was woken up for my dinner at 6pm and now I can't get to sleep. I feel like my recovery is going backwards.

Mainly I feel this is due to the constant pain and exhaustion my gall bladder is giving me. In January I had the night from hell. It all started at around 7pm on the Sunday evening. I've been dieting since around May last year and after allowing myself a bit of a break over Christmas had got back onto the healthy eating. After a particularly stressful day in work I had decided to take the night off, I'd been good since Christmas and just needed a bit of a pick me up. Following that I felt the worst pain I had ever felt in my life. I didn't get a single bit of sleep that night and I just spent the whole evening in various crazy positions, rocking, rolling around, crying in agony. I was hallucinating pretty badly too and couldn't think rationally. Not once did I consider shouting for my mum for help or calling the out of hours doctors. I don't think I even knew where I was and couldn't even have told anyone what the pain was. I couldn't even pin point it. The following morning my mum found me at around 10am screaming in so much pain. She managed to calm me down, I managed to think a little more clearly and was able to pin point my pain to my right side underneath my rib cage. Turns out I had an infected/inflamed (I've been told two different things so I have no idea which is the case) gall bladder and gallstones. Great.

I've had so much trouble since then and still don't have an operation date. I had about 3 weeks where I managed to get it under control but it seems to be dragging me down again. My doctor has tried to get the op sped up but I've heard nothing and my knee surgeon may not go ahead with my surgery next week unless everything is well with my gall bladder. It's absolutely frustrating.

I'm working so hard this week to keep rested and try not to aggravate the gall bladder. Hopefully it will settle down again. I'm just constantly tired and I am desperate to get my other health problems sorted out as it's having such an impact on my progress with my M.E.

I'm desperate to get things sorted out so that I can move on with my life and start living again. Mentally I'm ready for that now but my body seems to disagree. 

xx

So what is M.E?

Seems like as good a place as any to start. 

This is the basics. The very basics. There is still a lot of debate and discussion about the illness and still a lot the medical profession don't understand about it. The following information is sourced from various NHS booklets, M.E/C.F.S organisations and my own experience. It is in no way limited to this information and the condition can present itself in many ways. Some people will have minimal symptoms and some people will experience many. 

The illness is usually referred to as M.E. (Myalgic Encephalomyelitis - yeah M.E. is way easier, I never remember this when asked), C.F.S. (Chronic Fatigue Syndrome - which I dislike for reasons I will probably blog about another day) or Post-Viral Fatigue Syndrome.

Symptoms can include but are not limited to:

- Long term overwhelming and persistant fatigue or exhaustion that is unlike the feeling of normal tiredness

- Mental fatigue, poor memory and concentration, difficulty with words and speech

- Muscle and/or joint pain

- Sleep difficulties including waking unrefreshed
- Heart palpitations

- Poor appetite and/or nausea

- Sore throat and swollen glands

- Headaches, dizziness, visual problems

- Inability to regulate temperature, sensitivity to temperature changes

- Low mood

- Sensitivity to light or noise

- Abdominal pain, IBS symptoms

- Mobility issues

- Problems with the nervous system

So how does it start? For many people it can start with a viral infection such as glandular fever or flu. It can also be triggered by stressful life events such as a bereavement, divorce, family problems etc. Sometimes it can be impossible to pin point an obvious start. It can affect all ages groups and people of all backgrounds.

There is a stigma attached to people who suffer from M.E. that it is just laziness. This is quite the contrary, studies show that M.E. is more likely to occur in people who are driven and lead active or busy lifestyles as it is often the case that these people do not give themselves time to fully recover from the initial illness or lifestyle event before continuing with their normal everyday routines and this can be how the condition begins. Then begins a downward spiral of events where on a "good day" they do too much which leads onto a "bad day" where everyday things become very difficult. This becomes a cycle known as "boom and bust". The longer this carries on the harder it can become to get well again.

Understanding the illness has been key to my recovery so far. By having an understanding of how and why things are happening to me I can learn how to control them and how to spot the warning signs I might otherwise have missed. I won't go into full scale detail right now of all of these things such as the way the muscles work (or don't work) and how breathing is affected, adrenaline etc, as I don't know who is going to end up reading this blog and how much they really would want to know about it. There is so much (useful and utter shite) information out there that you can take a look at. I have spent 18 months on a rehabilitation style programme through the NHS and still don't feel I have all of the answers. 

I hope this is of some use to somebody out there. I'd like this to be more of a forward moving blog but I do feel it's important to get the basics down and outline a little history too. I will do a post that is more personal to my own experiences, my diagnosis, treatment etc. It may just take a little time to work it all out, the last few years have been a bit of a blur of exhaustion, lost dreams and lost direction. I feel like I am only just rediscovering who I am and what I enjoy in life. I still have a long way to go but I have come such a long way over the last two and a half years.

Thank you for taking the time to read xx

A Very Brief Introduction

Hi, my name is Laura, I'm 27 years old and this blog is about my journey with M.E. or Chronic Fatigue Syndrome as it has been labelled in recent years.

I really wish I had started this blog years ago as I feel it would have been beneficial to document my battle for a diagnosis and my struggle to be heard by the medical profession. I will outline all of this in a future post but this blog is mainly going to be about moving forward and progressing with my life. I'm have M.E. but I'm not M.E. I am learning that this illness does not have to control my life if I can learn to control and manage it.

I hope you will find this blog interesting and it will help you if you have M.E. or know someone with the condition. 

Laura xx