Back in December 2016 I wrote a blog post called Broken, which you can find here – https://themyastheniakid.com/2016/12/15/broken/ in case you missed it.

I was writing about a friendship that had reached breaking point. Although by the time the piece was written, we had discussed the situation and apologies had been made and accepted, I wasn’t sure if I could let the anger go and be able to move forward, to be honest at that point I wasn’t even sure if I wanted to. We had talked but all it had done was make me angrier, probably because I had kept quiet for so long that I was now truly having to deal with all those suppressed feelings. I knew for our relationship to continue I had to deal with that anger and effectively let it go. If I didn’t there would be no future in our friendship because I would be forever looking backwards and not forwards. In working through that anger, I became more sympathetic and understanding of the whys and hows this had all come about. I had to shoulder some of the blame for the situation because I had been blinded by my own anger, I couldn’t see the person before me was desperately unhappy and broken.


It took time (I know we are coming to the end of March so it hasn’t been masses of time) but my friend and I are back to where we were before this hiatus. When I wrote the first piece I didn’t know if we would ever get back to where we were. However we are back and actually better than we have been in years. All it took was an honest conversation, one that so many people shy away from and act emotionally rather than rationally. This means looking at the good, which was 98% of the time in 20 years and understanding that 2% was out of character and down to a horrendous amount of personal tragedy.


I am not saying every relationship can be saved, nor am I some sort of tree hugging hippy. There are times in our lives when you have to say for the sake of  your own mental health enough is enough. Sometimes people cross a line, their words or actions can’t be forgiven let alone forgotten.

Toxic, unhealthy relationships should be terminated at the earliest possibility. Far too many of us give abusers (because that is what they are, they abuse our friendship, our trust, our dignity) excuse after excuse for their behaviour, we take on the blame (and possibly shame) that should be squarely planted at their door because we are people pleasers. People like that though are never pleased by your actions as they will always find fault, they are emotional vampires, sucking you dry and tossing you aside when you are no longer any use to them or they have begun to suspect that you are starting to see them for what they are. That was never the issue in my friendship but I have had other relationships where this has been the case.


So not all relationships can be mended and I am not pretending that they can. Sometimes it is far healthier to just call it quits, sometimes people outgrow each other or want different things from life. I realised that this wasn’t the case with my friendship, yes I had been hurt but I had to take a long hard look at the last 20 years and ask did the good outweigh the bad? Once I had accepted that there was more good associated with this friendship and this person was one of the few that had stuck by me since getting sick, the anger started to dissipate. I won’t lie the first couple of meetings after our discussion were a little awkward, we both felt it and openly talked about it. We looked at ways that it could be made less awkward, we discussed that it was probably the need for time to pass and the need for more regular meet ups that would solve this. The whole point was that we came at the solution together, so we knew that the relationship meant a great deal to both of us, it didn’t feel like one person was doing more than the other, which can lead to resentment.


I am no longer angry about the things that happened before and I am not holding onto any grudges. I have let all of that go, it was a natural process not something that was forced. When we started talking more honestly and openly things improved rapidly. It wasn’t easy for my friend either, there were times when they needed reassurance. They needed to hear from me that things were back to normal, I couldn’t expect them to read my mind, it had to be said out loud, so they knew what I was thinking and feeling. The words need to be spoken and assumptions not made. We are back to enjoying each other’s company and there is no anxiety for me anymore as there had been previously.


I have learnt a great deal from this experience, I have never previously bothered mending a friendship that I believed was broken beyond repair. Before I would have just cut this person out of my life without a backwards glance. This has shown me that some relationships are worth working on and saving, rather than taking the easy option and avoiding confrontation. I know now that I should have spoken up sooner rather than let things fester. By failing to communicate I was as much to blame for the friendship floundering. I now know that it is far better to voice concerns than hold onto them. There will be bumps in the road, there always are in life but it’s how we address those bumps that matter the most.
We have come a long way since my blog post in December last year but things have definitely moved from broken to unbroken and more beautiful than before.


When I was at university a group of my friends gave me the nickname boffin (for those outside the UK please use this link for an explanation https://en.wikipedia.org/wiki/Boffin) due to my ability to grasp complex facts or theories very quickly. It was also because quite often I would do excessive extra reading for subjects. When I was working in my management position (which seems like a lifetime ago) I was known for being able to regurgitate facts and figures after a quick scan of documents, quite often I would be handed briefing packs to read and then give a high level overview to the rest of the team.


That all disappeared when I became sick, my memory just shrivelled up and died. I couldn’t tell you what the day of the week was or the shift I was working. I simply couldn’t think straight anymore and my power of recall just disappeared. It has been something that has always really bothered me as I had a vast knowledge of historical facts and general knowledge. I used to absorb information like a sponge.I loved dazzling Jay with my knowledge when we watched quiz shows together.  Now I can’t tell you what the main characters are called that were in the TV programme I have just watched, on a really bad day I couldn’t even tell you the name of the programme.


However something really weird has happened over the last few weeks since giving up dairy 5 weeks ago and gluten on January 1st ( I have no idea if this is relevant at all but it’s the only major change I have had in my life) all of a sudden I feel more present rather than being enveloped in a bubble of fog. Yes I still use the wrong words for things, still ask for the wrong thing to be brought to me and look for my phone……when its in my hand. Those things haven’t changed at all, what has changed is my ability to access my long-term memory. Before I literally couldn’t pull any information from the dark recesses of my mind, if I learned some piece of general knowledge more than a few months ago the details I would be able to recall would be hazy at best or nonexistent. Now for some reason I am beginning to recall information which is really bizarre.


Jay and I tend to watch these two TV  shows Pointless (https://en.wikipedia.org/wiki/Pointless ) and  Eggheads (https://en.wikipedia.org/wiki/Eggheads_(TV_series) ) whilst we are eating our dinner if we don’t have any cookery shows recorded. Once in a blue moon whilst watching these shows I would get an answer right, a cause for celebration as it was so rare. Most of the time I knew the facts were in there I just couldn’t unscramble the information it was like the decoder and connections were missing. It was particularly bad if you had to put names to famous faces. I knew they were famous but their names would elude me.


Over the last few weeks my ability to recall information has become a lot better. I am nowhere near the ability I had before I got sick but from the level where I was at this is a massive improvement. During numerous episodes of Pointless I have been able to answer every question on the board (apart from anagrams but I have always been shite at those unless I have pen and paper in front of me), I have also been able to put names to the famous faces. The improvement has been unbelievable, Jay has been laughing and telling me “You’re on fire”. It makes me feel good when I can answer the questions as I had been feeling like my cognitive function had been declining rapidly I wondered if I would ever stabilise or get some of my thinking power back. This improvement has shown me that it’s still all there, I accept it will never probably be back to the previous 2007 and before level but it’s a massive improvement all the same.


Last year was particularly bad for my memory, much of the year passed me by in a blur due to the pain levels I was experiencing and amount of painkillers I was taking. However the painkillers reduced from before Christmas and it’s now the 21st March. I was beginning to know exactly what it meant when someone said they couldn’t think straight. If it had been down to pain and the medication I would’ve expected the improvement in my recall and memory to have happened much sooner after Christmas.


Maybe it’s been a combination of reduced head pain / medication and the change in my diet? Who knows, without proof it’s difficult to say and what has worked for me may not work for others but I am almost back to Boffin status.


* * *

Neurology CSF Leak update

I finally saw my neurologist this week and I have been officially discharged from his care, with instructions should the leak re-occur I am to be immediately referred back to him. He was genuinely chuffed that my leak has cleared up on its own and we spent much of my appointment talking about how difficult it can be to get a diagnosis of a CSF Leak and other conditions and how hard it is for patients when there is something wrong with them but they are met with medical professionals that insist that it’s all in their heads.


He was explaining that many of his CSF Leak patients have spent a lot of time being pushed from one medical speciality to another whilst their doctors try to work out what is wrong with them. We both feel that I was very lucky my GP was so on the ball ( I miss you Dr J!) and recognised that the awful head pain I was suffering with was a low pressure headache. He said that many of his patients have spent months of not years waiting for someone to realise this was the case.
It’s so nice to have met this consultant and his team who have gone above and beyond to help me. Thank you.