Shout for help

Heading back to that dark place?

I am at a cross roads right now, I have been backtracking recently - going back towards that very dark place where I previously existed, and it terrifies me beyond belief, I don't know how I would cope with another visit to that place, I don't know if I could survive it again.

I managed a few days away recently, it was a struggle but I enjoyed it, yes I was in pain... a lot of pain in fact, my breathing wasn't great, my swelling evident and I was extremely lethargic but battling insomnia at the same time. However regardless of all the negatives that could have ruined our little trip to see family, Amy and I, both, really enjoyed the break from normality.

On the journey home I started to deteriorate, I knew that I would be 'in for it' after such a busy few days and prior to our trip I had already started to come face to face with the possibility that the Stem Cell Treatment had run its course and that I needed my second (and hopefully final) dose long before the expected and hoped for 'few years' that had been proffered when I went to America for my 'life-changing' treatment.

The pain has become so bad, of late, that I am back to being practically bed-bound day to day, I can hardly differentiate between night and day as all I see are the inside walls of our home. I move - I hurt, I stand in the shower and the water falls viciously and carelessly onto all my nerve endings, sending pain ricocheting around my entire body, I lay in bed and my body aches for me to move, so I get up and my body craves rest but at the same time the pain keeps me awake, aware of all the different types of agony I am experiencing, unable to hide from it, even for a moment.

This poem is for Neuralgia however it seems very fitting for any chronic pain illness

I have gone from not being able to sleep for the past few weeks to now barely being able to wake up, I honestly can't say which is worse; they both carry their own demons, they both haunt me. I have started to suffer nightmares again, ones that are filled with trauma and anxiety, I am always trying to get away from something, to escape but I never can... whatever it is, it always catches up with me in the end but before I can face the consequences; I wake up. 

I am a big believer in what you dream being a reflection of your daily life, I don't believe that it mirrors your life, however the emotions you experience; the stress, anxiety, fear or if you are lucky enough happiness are all derived from the thoughts and feelings you carry with you from wakefulness to sleep. Judging by my dreams I am in a very difficult place right now, and I know that I am, that that is the truth. 

I have been having better times lately, where by, for example, I can spend time with my nephews at my sister's house, nothing anyone else would necessarily get too excited about. To me, though, those times are invaluable, they are something I simply didn't have before. I had drifted so far from my family because of my illness, because I never saw them, that I felt the thread connecting us weakening and tearing and I was at a loss to stop it.

So when people ask if the Stem Cell Treatment was successful all that I can go on is the fact that it has given me the chance to get to know myself and my family again, that I can sit in front of this laptop and write occasionally and that not every moment is spent in bed staring at the same four walls.

So yes, it is better, it may not be amazing to anybody else but to someone whose life had become a shell of what it once was, who existed at the far end of a dark tunnel and could see no way out... What this Stem Cell Treatment gave me was nothing short of amazing to me, a new lease on life. But now that I feel it all slipping away again, heading back to that dark, scary place I am afraid, no I am terrified, knees quaking, hands shaking, terrified... I don't want to go back there... I can't go back there.... because if I do then I am not sure I have the strength to fight my way out again or to wait until someone can come and rescue me.

My blog - my diary

This blog has become, amongst other things, my diary and all of you who choose to read it my confidantes and I appreciate you all. It means a great deal to me to know that I am not alone in this; that I have people that care enough to follow what is happening along the way.

Amy is trying to get in touch with rare disease specialists as it has now become apparent that after years of having Dr Vyas (A Chest Physician at Royal Preston Hospital) coordinating my care and making efforts to try to help me, he has now stepped back. 

The day we went away I had an appointment with his nurse, as he is unable to see me for the foreseeable (I still don't have an appointment with him), Dr Vyas was in the building and his nurse acted as a go between. 

We did our best to get across all of my symptoms and their seriousness, how they affect me day to day, we told her how hopeless it all feels, and she went to see Dr Vyas and came back to us saying that 'Dr Vyas is a very busy man, he is dealing with patients who ARE his specialty and he unfortunately doesn't have time to help.' That was a truly devastating blow! 

Dr Vyas has always been my only advocate, the only medical professional who took the time to coordinate my care, without him I am lost amongst a sea of patient files, nothing being linked together, my symptoms being treated separately, if at all.

He prescribed me some sleeping tablets, as at that point I was having trouble sleeping and my GP wouldn't prescribe me anything, he also wrote me up for a steroid nasal spray, which he advised via his nurse that he didn't hold out much hope for. He told her to tell me that the questionnaire was a great idea and that I should pursue it, that being proactive with my care was fantastic and I should look for an advocate for MRS with urgency. In other words; he couldn't be that for me anymore.

I don't even know whether he would put me on his ward if I get admitted again, I am so lost and alone in this battle that it scares the hell out of me! I am lucky I have Amy with me, helping to fight my corner or I don't know what I would do... probably lay down and never get up! :-(

It feels so desperate when a doctor you have trusted and put your faith in to help you gives up on you, when you are too rare, too much trouble, handwork, not their specialty... Where do you turn at this point? If anyone has any ideas then I would gladly receive them...

My nasal swelling is problematic as it means that wearing my Non-Invasive-Ventilation machine (via a nasal mask) is not always very easy. I have already been struggling for breath recently so this just adds to the difficulties I endure breathing-wise. 

NIV nasal mask

When I saw Dr Vyas's nurse she did a blood/gas test and discovered that my Carbon-Dioxide levels were higher again, which means that the NIV is not doing its job. I will have to have my settings upped again and again until it keeps my levels within an acceptable/safe range. In the meantime I wake up with excruciating Carbon-Dioxide induced headaches that refuse to respond to any pain relief/treatment at all.

The body pain I have at the moment is such that to simply place my feet on the floor feels like I have no protection on the bottom of them, no skin, no flesh, just exposed nerve endings that are being agonizingly crushed against the flooring.

My hands and fingers ache painfully, the sensation running up my forearms, feeling as though it is liquid pain pumping through my veins. My left thigh feels as though I have a trapped nerve the pain pinching and shooting in equal measures. 

My stomach, with its inflamed subcutaneous nodules, is swollen and bloated, making me feel sick and as though I have a wooden block across my middle making it stiff and making any movement distressing at best, excruciating at worst.

My back has swollen subcutaneous nodules all over it causing an extreme burning and throbbing pain through it, making staying in one position for any length of time impossible.

My face is swollen and painful; as is the rest of my body

My face is swollen, particularly near my mouth, my lips taking the brunt of the swelling. I have sores/ulcerations all the way through my mouth, along the side of my tongue, on my gums and down my throat. 

Eating is not a pleasurable task, brushing my teeth hurts and leaves the sink filled with blood as if to prove the fact that I have just endured pain in order complete such a simple, mundane task as cleaning my teeth.

My face and head feel like I have been beaten up, attacked without mercy, as though punches were rained upon me until I could feel the imprint of their fists on my skin, burning into me. My face is smarting from an attack that never took place; I am after all a victim of MRS not another person, not anything I have even the faintest chance winning a fight against.

I don't feel like I can win this battle, I am all alone against an invisible assailant, wishing that I could reach out and touch someone else who is suffering the way that I am, who understands what this feels like. 

Luckily for me, though, I have a partner who is trying to imagine what I feel, who is attempting to put herself in my shoes. This cannot be fully achieved but I know that she knows me and understands me better than anyone else because she sees it every day, she sees my struggle and she struggles through it with me. 

I know that like me she too is terrified of going back to that dark place so all we can do now is, together try to find a way to fight back, to not end up so far down that dark, tunnel that we can't get back to the light or indeed to each other.

This is basically Amy's promise to me

I truly hope that anyone out there with MRS takes the time to complete and return the questionnaire we have put together, it is the only means we have of finding out more about this horrible, rare illness and our only effective way of fighting back. 

The idea is to start our own MRS charitable foundation, to find doctors/medical professionals willing to step up and be advocates for our illness and to encourage treatments, trials, maybe even help to find cure. 

Amongst all of these hopes and dreams for us and every other MRS sufferer, and their loved ones, there is also the hope that we will no longer face it all alone, that we will find a way to find each other and fight the battle against MRS together. We don't have to be MANY to be heard we just have to speak collectively and loudly enough.