Worst pain maybe ever!!

Recently I have truly been suffering.

I've had days where I moan from the pain or pace around because I don't know what to do about it! This is not good!

As I've mentioned, being in severe stress and anxiety is obviously not helping at all! Therefore I have had to make the difficult decision to stay off work for a little while. I didn't want to do that but it's one of the only things I can control that then takes a lot of stress and worry out of my life. It means if I sleep badly, I can lie in in the morning. It means that I don't have so much that other people put on me without understanding how I am feeling. It means that I can have the time to try and sort myself out mentally as well as try to manage my head pain.

I did have one moment though, where I used one of the new programs on my stimulator (the 10hz one) and I think it actually lowered my pain. I was super dizzy and in huge amounts of pain so I sat down and put this program on for 10 minutes or so. I could still feel the crushing head pain at my temples while it was on. But shortly after, and I mean minutes after, it was gone. The usual dull ache was still there but the worst was gone! I had also taken ibuprofen and paracetamol slightly earlier in desperation but surely they can't have helped like that! I'm sure I'll get to try out this program again soon enough.

Even more waiting!

After attending what I thought was a consultation appointment with my neurosurgeon, it turns out it was a reprogramming session. Luckily I picked up my remote as u went out the door!!

For the first time ever I was emotional! I held it together but I know my voice was wavering. He went to get Mr Patel to discuss my issues with the battery moving.

When he came in the room, I was slightly less emotional, as I always feel I need to be matter of fact with him. I explained that things have been worse and that I'm now suffering stress/anxiety due to everything in my life. He asked if everything in my life was difficult and not right, and I replied that the only right thing was my boyfriend!! He replied that that was something to reflect upon! I know he's right but at the momen it doesn't feel enough to keep me sane!!

Mr Patel then discussed the questions he'd been asked to respond to by my work, saying that he was, as always, non commital but clear that there is every hope that I will be able to get back to work as normal but that the operation to implant the stimulator was not a 'silver bullet'!!! He said that he explained that it needs a lot of manipulation in order to get the best from it.

This made me feel that he had done what he could to support me in all this.

We then discussed the ON. I said that things had been far worse and that the stim hadn't been much help over the past couple of months. He asked (playing devils advocate) how would I feel if he was to take it all out. I didn't rush to say "no" but I did say that I wouldn't want that as it would hard to get it approved again. He talked about having it moved to over my ribs, which I said I wouldn't want as it would be in the way. He explained that in that case, potentially the best option would be to suture it down in the hope of securing it in place. Then he went on to say that if he was to go in, it might be that he contemplates a change of battery type, to avoid having to operate again. 

He said he'd make an appointment for a couple of months time for me to see him then and discuss all this. 

I don't really see why we have to wait! I'll have the same issues then as I do now, and it just means waiting longer and suffering more!

Mike, from St Jude's, then explained that the new type battery works differently and uses different waves so that the patient didn't feel the 'annoying' tingling feeling. He also went on to say that he might recommend adding a new and different lead as well, as this could allow the frequencies to be lower as the lead isn't a paddle but the contacts go around the whole lead, meaning that only a small percentage is emitted to the main nerve.

I guess at least there is still some hope for this. Having a plan for me is critical, and I did say this. So let's hope they find the right answer soon!

Then I had to go through the reprogramming. He seemed a bit lost as of what to do, but set two new programme that are a replica of my first setting but using higher frequencies, 10hz and 20hz. He then said that after discussing these kinds of issues with a professor who works at a hospital in Queen's Square, they find that 70hz seems to be most useful and that's where they start with every patient. Therefore, he set the same programme but with 70hz.

So 3 new programmes to try out for a little while.  

I'm not really sure how I feel. 

On one hand, I HATE waiting! I'm not coping now so why would waiting help. Also, it's just putting it off.

On the other hand, at least there's a plan. I don't know if it will happen or even if it will help but at least there's something.

So guessing, once again, time will tell. But in the meantime, I've got to somehow manage and get by, and also see how I cope with work! Whoopee!!

Lost my way!

Over the past few months I have beaten myself up about "not being me", knowing that I don't appear to cope with things the same way as usual. 

I seem to get really annoyed and angered by things easily. This can be because of change (which I hate at the best of times), people, choices, planning or organising things. I even seem to be running my life by time limits in which I should have finished or completed something, even simple things like shopping.

Recently this has culminated in me having crying melt downs, often before work in the morning. And just to make it clear, I am not normally that type of person. 

Anyway, after much support from friends who insisted I saw my GP, the appointment I made weeks ago finally came round. 

I didn't know how I would explain or how it would come out, but it seems I rabbited on about everything and got very emotional.

This was the GP I had sought out to be understanding and supportive ....and she was! 

She believes I am suffering stress and anxiety, which is also making my OCD worse too. She agreed with me that it seems to be since returning to work after the operation, back in February/March time. She also said that anxiety often comes alongside chronic pain, that's it's not uncommon. 

I have been referred to the pain clinic, in the hope that CBT may help me get myself back again. 

For me, now I've thought about it, this has been going on a long time. I fight it, and have been a lot, but really I know that's not the normal me. I think that it's because I feel I haven't got that hope to fight for/wish for/wait for, as I have had the operation, the permanent stimulator, that was my best hope! I always had something, in the future, that I was waiting for, whether that was a nerve block, PRF or the stim. I always had the next plan. I just had to be patient. I just had to make it to then.

Now, I don't know what the future holds. I don't know what I am holding on for. I don't know what is going to happen anymore. 

So therefore, I am lost!!!!

Waste of time :/

After building myself up to the telephone consultation...writing down notes of what I needed to say...and thinking that I would know the next steps on this ridiculous, long winded, repetitive journey behind, it was all a complete waste of time!

If it wasn't stressful enough to try and arrange cover for my class, make sure they actually turned up, then run around grabbing my belongings to be able to get to my car to have phone signal and some privacy to be able to take the call, it turns out a 45 minute wait is perfectly acceptable!!!!!

I basically waited in my car for 35 minutes before I phoned my consultant's secretary, but I had to leave a message. Being a teacher, I had to go back in to have lunch to allow me enough time to also have everything ready got the afternoon. Whilst sat eating my lunch, they phone and I have to answer the call in a cupboard, to ensure I'm not interrupted!!!

Frustratingly it wasn't MY consultant phoning, but a member of his team AND it turns out to just be a follow up on how the permanent stim is going!

Biting my tongue, I explain that I'm having trouble with the battery moving still and yes, I did try the abdominal belt. I explain that Mike from St Jude's has said there may not be many more settings available to me either and that these aren't helping the worst pain at all, and that these are happening more often. I add in extra bits about the wire stabbing, he suffers it's scar tissue but would need to be seen.

He asks out my work asking for some questions to be answered and how supportive are they, so I reply honestly that they aren't supportive and refuse a lot of reasonable adjustments that are requested.

He also asks if I wanted a telephone consultation. When I say no, he states that it would be best, with what I've said about work and the issues, if I came into see Mr Patel himself.

YES!! That's what I would have expected before now!

A couple of hours later, his secretary calls to make an appointment for 4th November to see him at the hospital. 

So I guess making any plans is again on hold but just for a little bit longer!! I truly hope I get some answers next time. I need this trauma to get sorted the best it can so that I can somehow deal with it and move forward. 

Irritated.....

Recently I have generally been irritated by my stimulator, no matter what program I use!

I tend to feel it a lot more than I used to, even on low settings, and it is really quite annoying. Because of the low frequencies I use, it feels like a heart beat or pulse in the back of head! It is pretty disconcerting. I used to get this if I rested my head against something that pressed on the lead but now it happens when my head is not resting on anything at all!

I have also noticed that the left end of the lead seems to stick out more than it used to. I'm not sure if this is due to weight loss! Can you lose weight on the back of your neck??

I am still having the battery flipping issue too. 

I am awaiting a phone consultation from the consultant on 14th October. I guess this will be to discuss the issues with the battery and where to go next. I am Hong though that Mike from St Jude's had filled him in on the potential end of the line of settings to try with my stim, as I feel that this is also a big issue that I need to know what options are available ....or not!!

A couple of weeks back I had a coupe of days where I had weakness in my right hand. I have no idea if it is related to my ON but it seems pretty coincidental. I basically went to write something down and I couldn't physically hold the pen with any control. I was unable to write properly and my hand would spasm at points, making my handwriting look all over the place. I continually tried to corvette this issue through practise, but I had little fine motor control for almost 12 hours!! My hand and arm felt heavy and odd and I couldn't generally control it. It was so strange, but it hasn't happened since. 

I have been experiencing higher pain levels for a longer period of time than usual and throughout this have had extreme dizziness to combat too.

The programs I have set on my stim at the moment don't appear to be helping in any way. I either can't cope with the pulse or it is pinchy or too strong, or it is just my everyday program that doesn't break through the worse pain levels. I have usually been riding it out and it drops in intensity within a few days, by this time it hasn't and has lasted well over a week at this pain level!

Scar update

Thought it was about time to share how my scars are! 

Overall they are really good!

My stomach one is the best. 

You can barely see it now! Only problem is, I am almost certain I am going to end up with a new incision there, to sort out the battery movement issues. Shame really!!

My chest one is still irritating. It's looking slightly better but still very obvious compared to the rest, and the other half of it. 

It is still really itchy and sensitive when clothes or hair touch it. I am constantly itching it but it hurts to itch on it, so I am always trying to scratch around it. I am sti using rose hip oil on it, but really it just soothes it temporarily as I don't think it is making it look any better anymore.

My head scar is very fine and barely seen but it's the excess wire loop that is noticeable.

I do wear my hair up for the gym and that is manageable but I have worn my hair up for work a couple of times and by the end of the working day my head is tight and achy, so I can't keep it up any longer.

Work place assessment

Finally, after years of seeing Occupational Health and the same doctor recommending me having an assessment of my workplace, to see if there is anything that could be done to support me at work, I had this on Thursday 10th September.

Typically my school weren't prepared for the arrival of the registered nurse undertaking the assessment, which annoyed her no end! 

She came into my classroom for about 45 minutes and then I chatted to her whilst the class were in assembly! I then had to organise someone to take them out to break (in the middle of my meeting) and then had to interrupt once again to ask someone to organise cover for my class for a further 15 or so minutes! The nurse was outraged that cover hadn't been sorted beforehand, as it was supposed to have been! I tried to explain that this is usual for me! 

Anyway, she was thrilled by my teaching and pleased that I had done what was under my control to ensure the classroom was suitable and that I could use areas with as much ease as possible, and that I endured I didn't twist my head too much whilst using the computer at the front of the class. She was appalled that I had a rickety old desk that I had had to provide myself and that my chair was broken and therefore not supporting my back efficiently. 

She also recommended that I undergo a stress risk assessment, as obviously in a highly stressful job, she is aware that this has an impact on my condition. She kept saying "remember it is just a job" and "one day at a time"! It was great to here these things from someone who was solely there to think about my welfare. 

I then showed her where we do our lesson planning when out of the classroom.....and she was disgusted!! She couldn't believe that anyone, let alone me, was expected to use that area to plan on a computer for 2 hours at a time. She wrote many things to add to her report here, including lack of adjustable chairs, broken keyboards.

I am so looking forward to reading the final report. It will make an interesting read. And I wonder how many of the recommendations will actually be sorted or taken up??