Unbroken

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 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.

Boffin

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 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.

Moaning Again

It seems currently I can’t help myself, I appear to be moaning all the time in my blog posts. No outside observation has drawn my attention to this, it’s just I am starting to bore myself with it.

In January this year I went gluten-free after my mum’s diagnosis of Coeliacs Disease, four weeks ago I cut out dairy, which effectively means I am now vegan (after being vegetarian since birth). I am finding it relatively easy although in the second week I was craving cheese like mad. I did however work out it wasn’t the cheese I wanted but the salt it contained. I won’t lie I have found since giving up dairy the burning pain I had in the majority of my joints all day every day has gone. Which is great but the withdrawal from dairy has been hellish, for the first three days I had an almighty headache that I just couldn’t shift. Then recently I have had to endure the mother of all hidradenitis suppurativa flare ups, which has been incredibly uncomfortable and needing antibiotics to treat them.

I know its very early days in my whole food plant-based journey, 4 weeks is not enough to remove all signs of previous dairy consumption from my system but I really would have rather have the widespread burning pain in my joints daily than live with the pain my back is currently generating.

Monday I woke up with a trapped nerve which meant I could barely walk, the pain went from just above my bum, through my buttock, down my leg and into my foot. Most of Monday was spent chasing down pain levels that would have had me weeping with despair had I the energy levels. Tuesday it wasn’t too bad thankfully as for the first time in nearly a year I had a full head of highlights done. Luckily my hairdresser comes to the house but it’s still exhausting. By the time I got up from the chair I was left in severe pain in both arse cheeks. This was muscular in origin but it still really hurt. This morning I feel like I have been kicked by a horse in both bum cheeks, I have nerve pain running down my left leg and the whole of my pelvic girdle is on fire. Iliac crest pain for me is one of the worst types of pain I have to deal with as absolutely nothing stops it. I am currently sat on my heated throw hoping that once again a few hours of this will reduce the pain enough so that I can walk without pain.

Although I am sleeping better since the introduction of melatonin in January or maybe it was December (pain is just clouding my mind at the moment), currently I am exhausted from the minute I wake up. The quality of sleep is just not there and I do think my back is playing a major part in this. If it’s this painful whilst awake what the hell is it like when I am trying to sleep? I say trying because currently I am waking up every few hours feeling like parts of my body are being crushed. All this despite having a memory foam mattress and memory foam mattress topper. I feel groggy all the time during the day, like I have only just woken up. I hate not having a clear head as it feels like everything is a constant fight all the time. I can only describe it as feeling like I am hungover 24/7, which is disappointing when no alcohol is involved.

Even on days when my back is relatively ok by the evening the pain has returned, so there is no escape. When I can’t think clearly I don’t risk doing Pilates and injuring myself but it’s a vicious cycle. I need to start the Pilates to build up more core strength but I am paralysed by pain. At some point I will have to take the bull by the horns and just do it. But as I have said before part of my fear of doing the exercises is because that is how the leak started last year. I am also terrified of being stuck on the floor alone and having to call Jay out of work. I just wish I could wave a magic wand and have it all go away. I would then give everyone else a go on the magic wand and let them reap the benefits.

So I find myself moaning again, which I hate doing, especially when there are others out there much worse than me.

Touch Wood

For a while now I have been experiencing a good period with my head pain (caused by a CSF Leak). The last time I ended up completely incapacitated by it was 23rd December (2016), I still have headaches daily but they are much lower down the pain scale and there have only been two days since the 23rd December that I have ended up having to lie down for a few hours.

It scares me to write this as back in the height of summer I also experienced a good period. However the longer the good period went on the more I tried to resume normal life. I pushed it too far and ended up back to being incapacitated through pain, I was devastated. This time I am being much more cautious. I know bending triggers head pain, so I have been trying to limit that as much as possible. There are just so many things that you do without thinking that involve bending it gets very difficult to avoid it altogether.

In the past when I have written about any improvement in my health it always comes back to bite me on the arse. No adhesion pain for a few months, casually mention it in a blog post and then I will spend weeks with an abdomen that hates me. No migraine, the same things happens, so I have been holding off sharing the  news that there is a small possibility that the leak has slowly begun to seal itself without intervention.

EDS makes you a slow healer, wounds that would take a few days in “normal” people to heal can take months. Sprains that would normally resolve in 6 to 8 weeks can take 4 months or more. In August 2006 I sprained my ankle very badly, to the point where an operation to repair the torn ligaments was being mentioned by my physiotherapist. Finally by the December that year I was on the mend but I haven’t been able to wear high heeled shoes since. My ankles have become too weak, block heels can be worn thank goodness as I would hate to only be able to wear flats for the rest of my life!

The normal course of action for a spontaneous leak is several weeks of complete bed rest. I have seen anything from two to eight weeks suggested as conservative treatment. So if my leak is slowly beginning to heal itself, 12 months could be entirely possible because the connective tissue disorder Ehlers Danlos Syndrome (which is entirely the reason why the leak has happened) would cause slower than normal healing. Plus I haven’t spent the last 12 months on strict bedrest, I couldn’t as I would have lost the ability to walk (my leg muscles become very weak with prolonged bedrest) and my back would have never forgiven me.

I know I am far from out of the woods, if the summer taught me anything, it's that the healing process can be undone in seconds by just moving the wrong way. I know the leak is still active as I still have occipital neuralgia and that will be the last thing to go but the pain from this is much less than it has been. Occipital neuralgia often accompanies a CSF leak as the fluid irritates the nerves. When I look back now I realise that the occipital neuralgia was the first sign of trouble.

Although an epidural blood patch could potentially cure me if I could heal myself and avoid the need for the ebp I would be more than happy. For treatments of a CSF Leak please click on this link http://spinalcsfleak.org/about-spinal-csf-leaks/treatment/

I have stopped having the caffeine infusions as the head pain is manageable. My husband can tell how much I have improved of late as I am not asking him to pick me up high caffeine energy drinks anymore and I am no longer going through three bags of freshly ground coffee a week. We have been able to spend time together and have watched quite a few films in the afternoons when he has been day off. Something that hasn’t happened for a very long time. I am also managing to sit up until 7pm, which has been unheard of for over a year.

I still have photophobia but I am no longer having to wear sunglasses indoors on cloudy days. Car headlights at night still hurt and bright sunny days are a nightmare but considering where I was, it is a massive improvement. I still have headaches but instead of them being an 7 or 8 out of 10 by the end of the day they have dropped to a maximum of 5. I am no longer being incapacitated for days on end. It’s actually quite a strange thing to get used to, after being so ill for a year. Last year felt like my life was just on hold whilst I waited for either my condition to improve or to get the treatment that would probably cure me (the epidural blood patch).

I really hope that this situation continues, that I heal myself and can start enjoying life once again. Obviously I am still limited by my other health conditions but last year made me realise just how lucky I was when things could just be so much worse. Fingers crossed that I don’t manage to dislodge the seal that’s stopping my leak by sneezing, coughing, bending or lifting. So although I can now be upright, I still for the time being am acting like I am made of glass.

I wrote this piece several weeks ago and was too scared to publish it because as I said earlier in my post, when I do post an improvement within 24 hours whatever it was I said had improved will start up again. It’s now March 9th and I still have only had two days where I have had to spend a day lying down since December. I am really hopeful that my leak is almost healed, I haven’t had a caffeine infusion since January nor occipital nerve block injections. I still have to be careful with bending, as that does cause sharp pain in my head. The photophobia is slowly subsiding, I still sometimes have issues with car headlights at night but it’s no longer as if someone is holding a hot poker to the back of my eyes. I have been forced to take it easy due to contracting shingles back in February, my body still hasn’t recovered. I am easily floored by everyday things and it’s quite common for me to have to have a nap in the afternoon. I am also sleeping, some nights over 12 hours. I would love to say I wake up feeling refreshed but I don’t.

So I am hopeful for the first time in ages that I may have finally started to self heal and that this CSF leak will be a thing of the past. Touch Wood!

Back Pain Sucks

For a very long time I have had problems with my back. They first came to the fore when I was 16 and I started work. The job was physically demanding with lots of bending and lifting heavy items (I worked in retail). It wasn’t long until I started suffering from herniated discs and spending a lot of time at various chiropractor's. I wasn’t diagnosed with Ehlers Danlos Syndrome (EDS) until I was 37, perhaps if I had received the diagnosis earlier I would have been better able to protect my back.

When I first raised the possibility of EDS being the condition that was at the heart of all my joint problems and autonomic nervous system dysfunction I was basically laughed out of the doctor's office. I was told EDS was so rare that if I had it, I would have been diagnosed in early childhood (this from the same doctors practice that told me the pains in my legs that kept me awake at night were growing pains and I was 26!). The fact that my pulse raised by over 30bpm (and could actually double from 80bpm to 160bpm within seconds of standing) I was told was normal for your pulse to raise on standing.Which let’s be honest is factually correct, it’s just a normal person’s heart rate will rise 15-20bpm on standing and then go back to normal within a few seconds and mine didn’t do that.  I left that doctor's surgery a few months later and joined another practice, where I would get the support to finally end the mystery of the lifelong pain I had suffered.

When I did finally get the diagnosis in May 2011, I was told my spine was the most hypermobile joint of my body. It made sense as out of all the joints in my body my back was causing me the major problems. Whilst working (I left in 2008 medically retired) I found I could not stand in one place for our twice daily meetings without the pain starting immediately. I would be shuffling from foot to foot, finding something to lean up against or on other occasions finding somewhere to sit down. Standing still was agony and it’s very difficult to explain to people that you can’t stand still, when we do it all the time. At this time I was walking our three dogs for over 20 miles each week, walking could be painful when my back was exceptionally bad but I could push through that, the pain was so intense on standing still I would do anything I could to avoid it.

Moving is important when you have EDS, if I do not move, change positions every 15 minutes or so my body can become locked in that position. Even a short car journey can leave me being unable to stand up straight. Spending a prolonged amount of time in my wheelchair can leave me being unable to stand or struggle to transfer myself into the car. Last year I spent an awful lot of my time lying down due to the CSF Leak (which by the way touch wood, touch lots of it, looks like it has sealed itself), whilst the lying down relieved the awful headache that accompanied the leak it has destroyed my muscle strength in the rest of my body, particularly my back.

For the first time in 12 months I can be upright but due to prolonged bed rest I can’t do the things I want to. My legs shake when I try to stand, my back causes me immense pain when standing. The only way I can explain the feeling is that it feels like I have a lead weight placed on the top of my head and it is crushing my spinal column all the way down to my tail bone. Even walking is painful, I no longer feel like I am walking upright but as if my pelvis may collapse under me along with the bottom half of my spine. My left foot is back to being numb along with parts of my left leg. I haven’t been in this kind of mess with my back since 2014. Then I started to do Pilates to increase my core strength, it worked really well and I dodged the bullet of needing a spinal fusion. I have arthritis in my spine and a flattened disc. It was important to me that I didn’t have the surgery yet because with surgery comes a whole load of other risks.

I know I should start doing Pilates again but I am scared. Performing Pilates in 2016 is what “caused” the leak. Well EDS causing weak collagen caused the dura around my spinal cord to tear but I was doing Pilates when it happened. Do I want to exchange the back pain for the return of the head pain and the answer at the moment is no. A few more nights of disturbed sleep will probably change my mind. I wake up in severe pain every morning, due to not moving much whilst I am asleep. My spine seizes up and it becomes very difficult to move. Quite often when I wake my back is in spasm, so I lie there like a turtle stuck on its back until the spasm recedes and I am able to move again. My core strength has gone completely and this is putting more pressure on my spine. It’s a mess, a painful hot mess.

It seems a very cruel twist of fate that whilst my head pain has gone now that I have self healed my leak, that I am now left with pain in another part of my body. No position is comfortable now, sitting, lying or standing it all hurts. I am back to spending life with a hot water bottle tucked down the back of my trousers or like at the moment sat on my heated throw, temperature set to sear!

As always I am trying to push through it, increase my muscle strength so that I can get back to somewhere near my level of normal again. There is no stopping due to pain as there is no comfort in it. My painkillers aren’t touching it, like most people with EDS I soldier on enduring levels of pain that would have others curling up in a ball crying.

Back pain sucks, it really, really sucks.