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