Endoscopy

What a waste of time...

Apparently they found nothing so I'm being referred back to the surgeon yet again.

The endoscopy itself wasn't the best experience. I tried to have it done without sedation to start and managed at first but then panic set in and I started having a panic attack and couldn't breathe. It doesn't help that I have crap breathing to start with (due to my M.E. I don't take in deeper breaths, my breathing is a lot shallower and quicker - I can't remember the science behind it but it is in one of my medical books from the NHS) and the fact I tend to hold my breath a lot, for example when nervous or scared, or exercising etc.

So I was given oxygen and they offered sedation (they had talked me out of sedation to start with probably because it was late in the day on a Friday and sedation meant I had to stay longer, I dunno), which they told me would only make me slightly drowsy and I would still be able to hear and see what was going on, they told me if I wanted it under general anaesthetic I would have to be re-referred. So I asked for sedation, little did they realise the effect of any kind of sedation on me, I was completely out. Success!

When I came round I was in recovery. The first thing I remember is my arm felt sticky and wet. I looked down and I was covered in blood, my arm was drenched, there was a pool of blood on the bed, and the cannula from where I had the sedative injected was just dripping blood. There were no nurses about and my other arm was hooked to the blood pressure machine which chose to take my blood pressure at that moment. I was drowsy as hell and I remember wiggling the clip on my finger so the blood pressure monitor couldn't get a reading so it would keep beeping and hoping a nurse would come over.

Finally one came over and said the top had come off the cannula so she gave me a tissue and told me to press on my arm, but being so drowsy and with the damn blood pressure thing stealing my arm again I couldn't. She finally came back with gloves and took the cannula out and dressed my arm, leaving me caked in blood.

Not long after my pains started up. I hadn't had this pain for around 2 weeks, since the time I was meant to return to work but ended up unable to. I was in agony, the nurse asked what I normally take so I told her, she asked if I had any and I said no. Then she left me to struggle on. Finally after about 15 mins the pain eased off. Another nurse came over soon after, noticed my arm, cleaned me up and said I could go home.

I'm glad that's over, but now I'm worried what else I will have to go through to find the source of my pain. One thing that does seem interesting is how every time I have had an anaesthetic or sedative I get an attack of the pain upon coming round. Coincidence? I'm not sure and will be mentioning to my doctor. But then I do get the pains at other random times. So I don't know. It just seems strange how my most painful attacks of pain are after anything like this. Last night I tried to read up on the drugs they use to see if they are in the same family as anything I have been taking since the op, but I was too drowsy last night to make sense of anything.

It's so frustrating. I start to feel like my pain is gone, then it will flare up again. But I'm getting no answers despite all of the procedures they send me for. At least the pain is only every few weeks now, instead of every few days or even hours like it was at first. Maybe it's just severe bouts of post-op pain, but I would expect that to be localised pain, not pain that shoots about my whole stomach, right hand side, back, chest and upto my right shoulder.

Answers on a postcard please! Because it's more than I'm getting from the hospital...

xx

My Current Health Summary

I don't know where to begin with this post. So much has gone on since my last post and I should really make it less hard work for myself and post more regularly. That is what I intend to do from now on. I am going to make this more of a diary or journal of my health issues and situations.

A brief summary of where I am at with everything...

Post Gall Bladder Removal Surgery

Things seem to be improving. I still get pain from time to time but it isn't strong "attack" like pain anymore, although I do get it mildly now and again. It's more post-surgery healing. However I now seem to be getting pain behind my belly button, where my largest scar is from the surgery. I can't work out if it's within the stomach or muscular etc. All I know is that it is pretty crippling pain, which managed to hinder my return to work last week. I had a bad flare up that lasted for about 48 hours. The problem is with pain is that when it is so painful it can be hard to pin point exactly where the pain is coming from as it just takes over a whole area of your body, so when you speak to the doctor you are pretty much useless at explaining what is going on. I've tried strong prescription anti-acid tablets as obviously my system is still adjusting to having no gall bladder but they did nothing, and now I have had to stop taking them as I am having an endoscopy in a week to find out the cause of the pain. I am not looking forward to this at all. The other problem is I am taking Naproxen for my back pain and I was meant to have been prescribed the same anti-acids for that this whole time I have been on them (about 2-3 years) and wasn't, so it could be that they are causing issues also.

Post Knee Surgery

My knee has definitely improved although my legs are pretty weak now. I can walk down stairs pretty quickly as normal whereas before it was one step at a time, only being able to put one leg down first. Even stepping off a curb had to be thought out. My knee still clicks a little but I have to work on my muscles that hold everything in place and hopefully that will stop. If I'm driving in traffic my legs can go very shaky being on and off the pedals so that's an indication of how weak they have become. I was discharged from physio as there is nothing more they can do for me other than advise me to work on the muscles. I was advised to go back to the gym so that is what I have been doing for the last week, so far I have been three times and it does seem to be helping a little although it's quite painful and leaves me with a lovely swelling on my knee the day after.

My M.E.

Is having fun right now. Meaning I'm not. Everything that has been going on has left me drained, deconditioned and set me back a hell of a long way. Aches and pains have been a nightmare, I tire very quickly and my gym visits have left me with pretty bad post external malaise the day after, but obviously they are an important part of my knee recovery. I need to adjust and get myself back into good routines and work out a balance between everything I have going on.

Work

I'm returning to work on Monday and it's such a relief. Being out of work for so long may seem cushy but it's really not. It does nothing for your self esteem and confidence, you get sick of the same four walls but feel guilty if you go out anywhere, even to the shops or to a friend's house for an hour, because you feel worried that someone will see you and report you. And let's face it, sitting at a friend's house or going into town for essential things like getting your glasses repaired isn't the same as working a shift. Especially when the pain can be so sporadic and requires pain meds that make you drowsy or spacey. But it's always a worry. Besides all of this, being out of any kind of social atmosphere was beginning to make me nervous when I did go anywhere. Which leads me onto...

Anxiety

It's become extremely clear to me that I have a problem with this. I have had for a long time. I just didn't realise what it was. It's increased so much lately and I am awaiting a phone call from the councillor at my GP surgery to receive some sort of CBT for this. I don't want to say too much on this right now but it is beginning to take over my life and I'm not prepared to let it.

Pain Management/Physiotherapy

So my physiotherapist who is dealing with my general pain and back pain moved me on from acupuncture to hydrotherapy, which although I understand how it can be good for me, isn't working for me. Firstly the physio I had for the first two weeks was useless, then this week I had somebody else who was much better. But the pool was disgusting. Not good for a hospital and in the three weeks I went I have managed to get a toenail infection. Fantastic. Besides all of this I found it a little too easy. However my back has flared up a lot since stopping the acupuncture so now I'm being referred back for this and the aim is to incorporate it with exercise to strengthen my core muscles (which was the initial aim but due to my surgeries I couldn't do the gym work). Overall this physio has been the most worthwhile thing I have had in terms of being able to understand the back pain I have suffered since I was a child after injuring my coccyx and I feel it will work for me eventually. They are also going to look at a back rehabilitation class whatever that is. I also went to pain management today and they are referring me to a Buddhist inspired program called Breathing Space, which can help with dealing with pain, anxiety, depression etc. I don't know the full extent but I know the waiting list is quite long.

So I said this would be brief. But it isn't. From now on I will do more frequent updates so the post doesn't have to be so epically long. I'm going to leave it here for tonight, go and watch a few episodes of 24 and get some sleep as I'd like to attempt the gym again tomorrow so hopefully my knee will hold out better when I start back at work next week.

Hope this didn't bore you too much but this is a great way for me to get out some of my thoughts and get things clearer in my head, so if you didn't find it interesting at least I found it useful :P

xx

Post Surgery Update

So it's now ten weeks since I had my gall bladder removed and five weeks since my knee surgery and things are improving (very) slowly but I'm still having a lot of difficulty.

Today I went for an abdominal MRI scan to find out why I am still having a lot of pain from where my gall bladder was as well as why I am still having minor biliary colic attacks (the type of pain I had in the first place leading to the removal of my gall bladder). As I think I may have mentioned in my last post my GP seems to think it is possible that a stone is still in my system somewhere. Last week I also had bloods taken and so now I am playing a waiting game for my results for these and my MRI scan to come back. Depending on what these show up I may need an endoscopy (camera down the throat) to check for other things. I am seriously hoping the answer lies in the MRI/bloods so I don't have to have that done. It could be that I'm just healing really slowly, perhaps due to my body being put through two ops, maybe due to my M.E. but hopefully I will have some answers soon.

As for me knee it seems to be making some progress now. I can finally walk down the stairs normally after over a year, although there is still a bit of clicking. Today I walked round a shop for ten minutes without my crutches (although I did nearly stumble over a few times and was ready for crawling to the car by the end). There is still swelling, one of my scars randomly itches or burns quite often and is still really red and blistery looking and my knee tends to lock up now and again. I have two main problems that are hindering the recovery of my knee. One is that the muscles around the knee have weakened and despite doing the exercises I have been given and trying to walk around as much as I can physically manage (and sometimes pushing it a bit too much) they don't seem to be strengthening as quickly as I would have hoped. One of the symptoms of M.E. is muscle weakness so I think it's going to take a little more time than the average person would experience. The other issue is that I have hypermobility (double jointed). My knee wants to push back instead of bending when I walk and because the aforementioned muscles are weak there is nothing preventing this from happening. I have to make a conscious effort to bend my knee when walking. It all gets really painful really quickly.

As for my M.E. I feel the surgeries have had an impact on it but I think I have done all I can to limit the amount it has hindered my recovery. So far I have prevented a full relapse which could have so easily happened and was my biggest fear. I'm desperately trying to manage my activity/rest in a way that benefits all of my conditions and recoveries, sometimes I have got it seriously wrong and totally overdone things and have fallen into the Boom and Bust trap. But I am determined to get myself well as soon as I can so I can get back to some normality and get back to work and be able to go places and do things and hopefully be able to enjoy a bit of the summer after what has been a crap year so far.

One positive thing at the moment is my physiotherapy. I was referred once before for physio on my back and it was useless. When I was around 11 I damaged my coccyx (the small bone at the bottom of the spine) and it has been agony ever since to the point that if I'm not on strong anti-inflammatory meds I can barely walk after a shift at work. This time around I'm having my physio at the hospital and so far it has been great. I had a consultation and one session of acupuncture prior to my operations and over the last two weeks managed to have two more. I noticed the biggest difference last week after he increased the number of needles and the area he covered. I had been led on my side as I couldn't manage to lie on my front and the side he treated was so much better than the side he didn't, so this week he tried deeper needles and more of them again across both sides of my back. It is certainly helping although I can still feel a lot of tension in the muscles. We are going to continue with the acupuncture and once I am recovered from my surgeries I can start hydrotherapy which should be good as I have absolutely no strength in my core muscles but standard exercise would be too much for my M.E. at this time and also hydrotherapy will have less impact on my hypermobile joints.

So positives and negatives at the moment. I can see light at the end of the tunnel but I just can't judge how far away that light is and how long it will take me to reach it. 

xx

I Entered A Battle With Pain... And Lost

I wish I had something positive to report about my road to recovery but today has been pretty bad. My knee has been incredibly painful and swollen, the bruising has come out a lot more and I have barely been able to move or put weight on it at all. Frozen peas have kept me company for much of the day and I have been dosing up on the maximum amount of pain medication. The same pain medication that caused me to be on the phone to the GP on Friday due to problems with some of the side effects.

As well as this I have had two very painful episodes with what was once my gall bladder. They were very much like my old gall bladder attacks in the type of pain, just as strong but not lasting as long, around 5-10 minutes. I had one of these immediately after coming out of my anaesthetic on Tuesday following my knee surgery and despite being dosed with plenty of morphine the pain cut through enough to bring me to tears and left me writhing in agony. The dihydrocodeines only slightly took the edge off todays pains too.

I'm really quite concerned about what the pain could be. Obviously there is no gall bladder there, but I have read that there can be complications with gallstones still being left in the bile ducts post surgery, or leaking bile ducts, or a spillage of bile during the removal of the gall bladder. There could be a number of reasons for this pain but I'm fairly sure it is more than just part of the healing process. Looks like a phone call to my GP is in order tomorrow. Again.

I had really hoped that this was the end of my gall bladder related troubles but it looks like I may have a little further to go yet. I feel so helpless, it's so frustrating being so sick all of the time and being able to do nothing for myself. I want to move forward not backwards! 

xx

Removal Of The Bandages

So the knee unveiling was today. The bandages came off and I was left with this...

I have to say I was expecting far worse. I have had ice on it today so the swelling has gone down a little, there is still a visible difference in size, but I was thinking it would be black and blue. There is some bruising underneath the dressings where the stitches are but it's so neat and tidy. The incisions are tiny and only have one stitch in each. Please do excuse my slightly hairy legs in this photo also, I was told not to use any hair removal methods in the week prior to surgery to reduce the risk of infection.

Movement is getting better today, I can put a little more weight on it, cross my legs, straighten my leg out no problem. I can lift it and do most of the recovery exercises I have been given. I still struggle to bend it but that is probably due to the swelling more than anything. I am trying my best to keep it resting but in all honesty I am sooo bored now. The only thing that keeps me slightly occupied is the X-BOX, but I can only play on that for a short time as the dihydrocodeines make me feel sick all the time and I get the worst motion sickness. 

I'm about to attempt a shower, I don't know how long I will be able to stand as I usually end up holding onto the sink to brush my teeth, that's if I can even climb into the shower. It's so hot and clammy here though and the medical stockings aren't helping matters. 

The worst of it is again my stomach. The muscles were so sore last night and are still extremely tender today. All this pulling myself around and hobbling on crutches isn't helping me heal from my previous surgery.

I think a little bit of rest and this knee should heal pretty quickly. Then my stomach can heal once and for all.

xx

All Done And Dusted

Well that's it, both operations are now done. 

I'm really glad they are over and done with, but the recovery has been and still is extremely difficult. Having two surgeries in less than five weeks was probably not my best of ideas but that's all done now and I can finally concentrate on getting myself better.

I had my knee surgery yesterday and it was so easy in comparison to my gall bladder surgery, in fact I awoke from the operation and was in more pain with my stomach area than my knee. I was in a private hospital (under the NHS) and the atmosphere was so much more relaxed. I was looked after well and even got a lovely sandwich platter and pot of coffee and milk and a choice of sugars later on in the evening. I didn't stay in overnight, although I wouldn't have minded. I had my own ensuite room to recover in and in general everyone was very supportive. My consultant and anaesthetist checked in with me before and after surgery and overall it was as good an experience as surgery could be. I was later gutted to find out I could have opted to have my gall bladder surgery there too. If only someone would have told me.

I'm a little spaced out right now on post anaesthesia and dihydrocodeine so this post may not be the most well planned and might be a bit all over the place. I think I will probably be falling asleep very soon. I have to rest and wear some ever so unsexy full leg stockings for two weeks, I have crutches which I cannot use at all (it's quite comical to watch I imagine), and three more weeks off work. The hardest thing is moving about. Before, I used my legs to support my weakened upper body and stomach muscles. Now I'm having to use those muscles to help my leg move, but because they are still healing they get sore very quickly.

I seem to be slipping into a medication induced drowsy state so I will leave this here for now. From now on the only direction I want to go is forward. I have a few more issues I need to face first which I wanted to write about here but simply don't have the energy and it will probably be better in a post of its own anyway.

zzz... zzz...ZZZ... lol xx

Worry, Worry, Worry!

One of the things about an illness like M.E. is that you lose sight of the person you once were. I have only vague memories of my life before I got ill, and when I catch myself remembering I find myself mourning the life I had and the person I once was. It can make me very depressed at times and take me to dark places. It's something I tend not to talk about with anyone but I guess writing it out is different.

Before I became ill I was a lot more driven and committed to things. I could make plans with people and stick to them, would be up for trying new things. I found it easier to make friends, was more relaxed and I had an idea of what I wanted out of life. Before I could juggle work, college, friendships, a long distance relationship and still have time for myself. I would go to gigs and festivals frequently and in general life was good.

Now I find it hard just working part time and managing friends and relationships around that. I just about managed college last year but my attendance wasn't great. I feel like I can't make plans with friends as I can't always stick to them and have been labelled a "flaky friend" in the past as I haven't been able to be relied on. Now I feel it's just easier to not make plans to start with. 

A big fear of mine is how I am going to ever be able to support myself financially and physically. If I can't work full time how will I manage. I don't hold out much hope in getting government support and I'm not the kind of girl who will happily rely on a man to provide for me. At the moment I have to rely on help from my parents, and whilst I know they can and will do it and for this I am so grateful, I don't want to be in this situation at 27 years of age.

I want to fulfil my dreams of becoming a make-up artist but how can I ever do this if I cannot commit to jobs? Will I ever be well enough to do this? Do I have the energy to go through uni and then self promote and build a career for myself? Can I cope with the constant looking for jobs and having to compete with other make-up artists who have the added bonus of not having a disability? Will I even get funding to go to university after pulling out due to ill health once before?

Or am I best just giving up on those dreams and doing what I know I can manage and struggling on financially? I already gave up on my dreams years ago of doing graphic design. Most days I believe I made the right choice in giving that up, other days I wish so much I could have overcome illness and completed the course. But I just lost heart after battling so long.

People will say fight. Fight for your dreams, work hard and they will come to you. But for someone with M.E. it's a constant battle to get through an average day. Do I have the energy to fight? Right now I'm not sure and it's getting me so down. It doesn't help that I feel my M.E. is taking a massive step backwards after my operation. I'm pretty terrified of hitting rock bottom again.

Now I'm scared to do anything. Because chances are I will fail because of this damn illness. Saying no is becoming second nature, but is this really how my life has to be? Sometimes I feel like giving up, just saying "Fuck you world" and getting the hell outta here. But then I put my idealist head back on and think about how life could be and get myself all excited. Then my realist head comes creeping back in, usually at night and stops me from sleeping, and brings it all crashing back down. That's the cycle of my life at the moment.

I don't want this blog to be all about negativity. But the last few weeks I've had nothing to do but think and get myself down. The operation has left me feeling the worst I've felt for a long time and I'm scared that if I don't handle my recovery right from here I will sink in terms of my M.E. and my recovery. I'm due back at work in a few days and I really do not feel ready. Both M.E. and post op pain wise. I need the bank holiday money though and also I really don't want people to think I'm taking the piss being off sick. I don't even know if I'm being paid while I'm off so it's quite a worry. Worry, worry, worry. It's all I have been doing lately. I just wish my brain would switch into "I don't give a fuck" mode for a while...

xx

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