Radiculopathy and Myelopathy

DAY 1 of trying to type

So after enjoying a family event, I thought I was in a bad flare which was to be expected but my symptoms were just getting worse and worse. The neurological symptoms returned aggressively, worse than before. I knew it was my neck. I’ve typed these few lines and stopped…my right arm and hand won’t work. One week later and I’m back…where was I? oh yes the symptoms.  Starting from the top, the side of my face felt like electric shocks intermittently and behind my ears too. My head feels like it’s too heavy for my neck to support so occasionally wearing a soft neck brace helps with that. My shoulders feel like someone is sitting on them constantly; because of this I no longer carry a bag on my shoulder. My arms are so heavy and weak that everyday tasks like brushing my teeth and combing my hair are a real nightmare. The weakness and now the pain (because of typing) in my right shoulder, arm and hand are too severe to carry on typing so I’ll try again later…

2hours later

My legs feel like jelly and I walk with an altered gait which comes and goes, I can’t use any walking aids because my upper body isn’t working properly and I cant drive. My head will start to shake at random times all of which I have no control over and believe me I’ve tried.

1 week later trying to type this…

I decided maybe I should make an appointment to see a pain specialist again, maybe they could give me a nerve block injection in my neck to help with the symptoms. This was a new guy I hadn’t met before, he was rather abrupt in his conversation,   I personally felt he had no people skills whatsoever.  After giving him thorough details of my current situation and showing him a copy of my last MRI done in Nov 16, he said “there’s nothing I can do for you, a nerve block injection won’t help”. My heart sank and the tears started to flow uncontrollably. He explained it like this; the herniated disc is pressing on my spinal cord itself, you can block nerve pathways to the brain but not the pathway from the spinal cord to the brain. I think if I didn’t open my mouth again and just got up to leave he would have just said sorry and goodbye.

1 Month and 3rd time lucky…

I said to him, so that’s it? You don’t have any suggestions as to what I do now or where I go from here? He then said, ok what we need to do is refer you to the spinal surgeons at Guys hospital. Why did I have to ask him if there was anything else that could be done at this stage?

I pointed out that I already have a neurosurgeon that performed a successful Micro discectomy on my lumber spine L5/S1 2 years ago this month. So he would be the person I would want to go back to, and a referral was done there and then. About a month later I had been to see my surgeon after having a new MRI done to see if anything had changed since my last one 6 months ago and to be honest it didn’t show much difference. We concluded that conservative measures were not helping, and I told him that the pain specialist said he couldn’t help. Once again for me living like this is severely affecting my ability to function on a daily basis. So it was down to me whether I wanted to go ahead with a very common yet risky surgery.  If I don’t my  condition would either stay the same which is severely affecting my daily functioning, or get worse and damaged my spinal cord permanently and leave me paralysed. Granted I have had a few moments of rest bite and drove the car for 5 mins or so, but then I’m brutally reminded of what I’m living with.

 

LESSONS LEARNT

My surgeon is surprised at the severity of my symptoms compared to what he can see on my MRI, and admitted as surgeons/neurologists sometimes they will never truly understand the complexity of the nervous system/spinal cord and brain. I have joined a few groups on Facebook for support; one of those groups has helped me tremendously called Cervical Myelopathy Support Group, ACDF, Spine, Joint and Muscle Conditions reminding me how much of an advocate we have to be for ourselves when it comes to our health. The two same people could have an identical MRI but show significantly different symptoms. I believe having Fibro really doesn’t help.

Radiculopathy refers to a set of conditions in which one or more nerves are affected and do not work properly (neuropathy). This can result in pain, weakness, numbness or difficulty controlling specific muscles

Myelopathy Spinal cord compression

Image

 Hard wiring vs Soft wiring

 

I keep thinking what on earth happened in 2016, where did that year go? Why have I ended up feeling the way I am? It all feels like a blur now but I think my body is struggling to let go. Let me take you back to the beginning of 2016:

  • January and February, consumed with re-applying for my disability benefit
  • March, traumatic Atos assessment in my home
  • March, discharged from pain clinic nothing they can do for me anymore
  • April, Benefit decision, lost part of my benefit
  • April, Charlotte moved back home from university
  • May, weekend break in Cornwall with Mr W to recharge
  • May, lost my Motabilty car
  • June, went into hospital to have a 7x8cm cyst (pelvis) drained laparoscopically, only to be told we can’t get safe access to it without cutting vertically from navel to pelvis. I left!
  • July, Charlotte graduated from University
  • July, Rachel went to Aya Napa with her girlfriends
  • August, Rachel passed her IB diploma with part scholarship and got into her first choice university
  • August, my dad got married and I was a witness
  • August, Christopher received his GCSE results which were mind blowing
  • September, Christopher started his IB course at 6th form
  • September, Rachel left for university
  • October, won my court appeal and received my benefit back
  • October, my sister needed my support with looking for primary schools for my niece.

 

My symptoms crept in slowly… I noticed I was having difficulty putting one foot in front of the other, I had to really concentrate. Then my arms felt like jelly, too heavy to lift so impossible to use crutches. Then I noticed when I was watching TV or trying to read something, my left eye was blurry, dramatically different to my right eye. I kept that to myself for a while maybe it would pass, but it didn’t. I was stuck in bed unable to even lift my arms up long enough to hold a glass to my mouth or my phone to my ear. I ended up in A &E when those symptoms became unbearable, plus I could hardly see out of my left eye!

I was terrified now, (I never showed it) my mind was wondering to places I know it shouldn’t be going, is this MS, am I having a stroke, my speech was slower and I had a tremor.

The hospital gave me antibiotics for my eye and told me there’s not much we can do for you (that’s when I noticed the doctor had googled Fibromyalgia). If your eyesight does not resolve itself take yourself up to the eye hospital.

In November I was back to see my Neurologist, I had another brain and neck MRI, (I already had a damaged C5 cervical disc) I had a myriad of blood tests and nerve and muscle testing done, again. They all came back normal; my neurologist was looking for a handful of different neurological conditions. The tremor I discovered was from the morphine patch I was wearing and the rest is Fibro…

My consultant and I chatted for ages, it was obvious he was frustrated as was I, that there is nothing he can do for me; he knows I have tried everything and more than he could offer. He told me ‘we have checked your hard wiring i.e. the nerves and muscles, and they are fine. It’s the soft wiring we don’t know how to fix’. My brain is misfiring and sending the wrong signals to every part of my body. We even talked about Hyperbaric Oxygen chambers which involves breathing pure oxygen at higher than atmospheric pressures in an enclosed chamber. A few of his MS patients have tried it but the results were very short lived.

It’s now a new year and who knows what’s in store for me this year, the last few months are still taking its toll, my arms still don’t feel like my own and the costochondritis plagues me on top of everything else, but my eye is back to what I would call my normal. Christmas is out the way, the crap food is gone and I’m focused and happy, happy new year from me to you.

 

Lessons learnt

When these symptoms started I didn’t feel stressed at all and couldn’t think what could have possibly brought them on. Only when I looked back at my calendar did I re-live those emotions of those events. Anxiety, depression, joy, exhilaration, sadness, disappointment, anger, humiliation, fear, to name a few. I can only guess that’s how my body dealt with them.

 

Loss

 

Most of us unfortunately have experienced some form of loss in our lives in one form or another. As a society we cope better with the finality of death. There are religious and cultural ceremonies, people attend memorials, send cards and flowers and even bring you food. Normally there is a tremendous amount of support in the initial weeks following, and maybe months afterwards. The few will be there for you for the years to follow.

But when the “loss” is not final or the stress and devastation of a chronic illness is ongoing, what then? There isn’t a card that says “sorry for your ongoing chronic illness”

Some people really don’t know how to deal with seeing their friends suffering and they don’t know how to react or behave. Illness can make people feel rather uncomfortable, unless that is if they make the effort to understand what’s wrong. Endless hospital and doctors’ appointments are obviously not as appealing as coffee and lunch dates, but imagine how your friend feels having to tell you they can’t make it because they’re in too much pain today or they’re anxiety is through the roof and they can’t leave the house.

One may feel abandoned and let down by their sick friend, but the majority of the time they are busy taking care and managing the complexity of their medical condition and can’t afford to focus on your feelings of abandonment this will intensify their levels of stress and further add to their suffering. Understandably one may have problems of their own and cannot find the energy to support their friends.

Some friends will fall away… the visits become less, the random chats on the phone become less frequent and the invites for shopping trips and coffee stop. There are levels of friendships that you have to decide whether they are worth saving, when you have zero levels of energy to fight with. Your focus in life dramatically changes but theirs stays the same.

Talking from experience, it’s important not to take it too personally even though it feels terribly personal when you’re going through it. It’s a learning experience. It’s important to give them the benefit of the doubt. Maybe they felt they didn’t want to bother you, perhaps they thought that no contact or little contact would be better than feeling helpless in your presence. Maybe they don’t know how they can be supportive, unless you tell them and make them feel at ease. They may also have their own struggles and simply can’t handle yours too. Don’t judge them too quickly like I did. Love them anyway.

Fortunately there are some friends that don’t fall away and don’t need to be told what to do or say. They can be your life line in helping you stay in touch with friends who think they may be intruding. You don’t have to be in contact with them every minute but you know those friends are always a phone call or text away. It’s even easier now with social media sites.

Thankfully there are support groups online for just about every illness and problems life can deal you. I have met some amazing people and made great friendships that I know only they will truly understand what it’s like to live with chronic illness…

 

 

Lessons learnt

 

The loss of your former self is a mourning process and I don’t know if and when that ends. But that doesn’t mean you stop living. You just learn to love a new self and appreciate the strengths you still have and the new ones you have found.

Depression in teenagers

Unfortunately we will never know everything that is going on in our children’s lives, even if you think you do, you don’t. We were teenagers once and we certainly didn’t tell our parents everything. Tragically a 16 year old boy who attends my children’s school committed suicide recently, he’s parents woke up and found him hanging in his room. His parents and family had no idea there were any issues. Apparently searches on his lap top suggested he was suffering with depression, my heart feels heavy as a mother to want to protect my offspring from something I don’t really have any control over.

I have first-hand experience with depression, and recognise many of the signs and symptoms but not all are very obvious. It’s so important that we recognise some of those tell-tale signs, if you’re unsure if an adolescent in your life is depressed or just “being a teenager,” consider how long the symptoms have been present, how severe they are, and how different the teen is acting from his or her usual self. While some “growing pains” are to be expected as teenagers deal with the challenges of growing up, dramatic, long-lasting changes in personality or behaviour are red flags of a deeper problem including:

  • Sadness or hopelessness
  • Irritability, anger, or hostility
  • Tearfulness or frequent crying
  • Withdrawal from friends and family
  • Loss of interest in activities
  • Changes in eating and sleeping habits
  • Restlessness and agitation
  • Feelings of worthlessness and guilt
  • Lack of enthusiasm and motivation
  • Fatigue or lack of energy
  • Difficulty concentrating
  • Thoughts of death or suicide

Differences between Teenage and Adult Depression

Depression in teens can look very different from depression in adults. The following symptoms of depression are more common in teenagers than in adults.

  • Irritable or angry mood – As noted above, irritability, rather than sadness, is often the predominant mood in depressed teens. A depressed teenager may be grumpy, hostile, easily frustrated, or prone to angry outbursts.
  • Extreme sensitivity to criticism – Depressed teens’ are plagued by feelings of worthlessness, making them extremely vulnerable to criticism, rejection, and failure. This is a particular problem for “over-achievers.”
  • Withdrawing from some, but not all people – While adults tend to isolate themselves when depressed, teenagers usually keep up at least some friendships. However, teens with depression may socialise less than before, pull away from their parents, or start hanging out with a different crowd.

Encouragement to open up

If you suspect that a teenager in your life is suffering from depression, speak up right away. Even if you’re unsure that depression is the issue, the troublesome behaviours and emotions you’re seeing in your teenager could be a sign of a problem. Whether or not that problem turns out to be depression, it still needs to be addressed—the sooner the better. In a loving and non-judgmental way, share your concerns with your teenager. Let him or her know what specific signs of depression you’ve noticed and why they worry you. Then encourage your child to share what he or she is going through. Your teen may be reluctant to open up; he or she may be ashamed, afraid of being misunderstood. Or they may simply have a hard time expressing what they’re feeling. If your teen claims nothing is wrong but has no explanation for what is causing the depressed behaviour, you should trust your instincts. Remember that denial is a strong emotion. Furthermore, teenagers may not believe that what they’re experiencing is the result of depression.

Here are a few suggestions:

  • Offer support
  • Let teenagers know that you’re there for them, fully and unconditionally, make it clear that you’re ready and willing to provide whatever support they need.
  • Be gentle but persistent
  • Don’t give up if your adolescent shuts you out at first. Talking about depression can be very tough for teens. Be respectful of your child’s comfort level while still emphasising your concern and willingness to listen
  • Listen without lecturing
  • Resist any urge to criticise or pass judgment once your teenager begins to talk. The important thing is that your child is communicating
  • Validate feelings, don’t try to talk your teen out of his or her depression, even if his or her feelings or concerns appear silly or irrational to you. Simply acknowledge the pain and sadness he or she might be feeling. If you don’t, he or she will feel like you don’t take his or her emotions seriously

There are many UK based Charities you can turn to for support as well as your GP. Mental health issues are nothing to be ashamed of.

Mind

Young Minds

Stem4

Papyrus

Calm

I am not a medical professional; I’m simply sharing my experiences. If you think something I’ve mentioned might be helpful to you in terms of drugs I have mentioned or exercises I have described please run it by your medical professional first

The Gel Phenomenon

I’m not sure I believe anyone really understands the reason for morning stiffness. Presumably, while the body is inactive, fluid leaks out from the small blood vessels and capillaries and the tissues become “waterlogged.” Then, when you try to move the part, the swollen tissues feel stiff (it may not look swollen) until the motion pumps the fluid out through the lymph channels and the veins. If you sit or lie down during the day the stiffness may return, it definitely does for me. This phenomenon is called gelling or the gel phenomenon, like the behaviour of gelatin, which remains liquid if kept moving and warm but solidifies if it sits for long. A lot like the fat you would skim off the gravy. This phenomenon appears to be normal from what I have been told. If your stiffness is that severe, you should seek advice. Whatever the reason it’s a pain in the, well everywhere.

 

With a minor condition, such as a sprained ankle or a tennis elbow, don’t worry too much about the stiffness. It’s a normal part of the healing process of bringing healing materials to the injured area. After my two shoulder operations it felt like I was never going to be able to move them again, so it’s vital you do the recommended exercises at the right time. After what seems like a life time of morning stiffness, and 7 months post op back surgery, it has only got worse for me.

When it comes to systemic conditions such as rheumatoid arthritis and Lupus, or conditions such as Osteoarthritis and Fibromyalgia (there are too many conditions to list), the gelling phenomenon will be something that has to be managed daily. For me its multiple times a day. Here are a few ideas.

Stretch gloves, spandex or similar elastic material, may help morning stiffness in the hands if worn overnight. The idea is to prevent the tissues from becoming waterlogged, didn’t work for me.

Trying a warm bath or shower upon rising will help, if you have the strength of course. Many of you will know what I’m talking about. It’s likely that could wear you out, and then you’ll have to rest again…If I can’t get in the shower first thing, I always run the hot water over my hands because they’re so stiff, they feel swollen.

Work at gentle exercises in the bed before you get up. You will have a certain amount of stiffness each day, and you might as well get it worked out as soon as possible.

Some people find that they are helped by using an electric blanket/heat pad; I am one of those people and even writing this, I have had to get up so many times.

A gentle massage may be all you need to get things moving again.

Yoga stretches during the day work for me.

A soft neck brace has worked for me during chronic flare ups, because of the pain that accompanies that stiffness.

If anybody has any other tips I would love to hear them.

 

Lessons Learnt

Stretches are an important part of my daily routine, but I’m cautious as to not over stretch as this only causes more pain.

 

I am not a medical professional; I’m simply sharing my experiences. If you think something I’ve mentioned might be helpful to you in terms of drugs I have mentioned or exercises I have described please run it by your medical professional first

 

Spread Chronic Pain Truth on Pain Reality Day: September 9th

Intractable Pain Journal

By Heather Grace, IPJ Staff Writer

Speak Up! Sept 9 is #PainRealityDay

For far too long, those of us who live with chronic and intractable pain have spent a great deal of time hidden away, behind closed doors—especially when the pain becomes overwhelming. It’s time to change that! Please join us in sharing what it’s really like on a typical day of a life lived in pain.

Show the world what it’s really like to live with chronic pain by being part of the 1st Annual Pain Reality Day—YOU are invited! Join us via social media all day 9/9/15, using hashtag:#PainRealityDay. This new social media event will take place every year on September 9th as part of the annual Pain Awareness Month campaign.

It’s time to tear down the walls that have separated us from the “normal” world for far too long—to finally fight the misconceptions about pain patients with a healthy dose…

View original post 1,051 more words

Perseverance

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Perseverance is not giving up. Persistence and tenacity, the effort required to do something and keep doing it till the end, even if it’s hard.

The quality that allows someone to continue trying to do something even though it is difficult.

Steady persistence in a course of action, a purpose, or a state, especially in spite of difficulties, obstacles, or discouragement.

Whichever way you choose to define this word, it’s a quality I have always possessed. I don’t actually know any other way of life, whether it be past jobs, bringing up children or dealing with Chronic illness. Chronic illness is what I’m referring to.

Sometimes in life we end up doing something we absolutely dread. Something that pushes that fear factor. Something which is a last resort. You talk yourself into believing it may never have to happen. You do every possible thing you can think of to prevent it from happening but sometimes it’s just not enough. After experiencing nearly 6 months of partial paralysis in my leg last year, a back operation I was still not ready for. God willing, after I got back on my feet I swore to myself unless I’m back to crawling on my hands and knees, I’m not letting anyone operate on my back. But that day came and I felt my worst fear become more real as each day past.

It wasn’t a decision made lightly, and I felt like it was a family decision because at the end of the day I would need a lot of care post-surgery. For 17 months I had persevered.

I felt anger that I was here again, I felt disappointment that I was giving in to something I wasn’t sure was the right decision. I felt sadness for the closest people around me, feeling like a burden once again. I felt anxiety for what was to come.

I had to find the right person for the job, I knew it had to be a neurosurgeon and had to be one of the best, they had to live and breathe spinal surgery. I did my research and with the help of friends, found who I believed was the right person, I was at their mercy. The consultation was an emotional experience to say the least. After thoroughly examining my MRI we had established that although the herniated disc had shrunk down in size, as it should after a period of time and with treatment, something was amiss. Having established I already have permanent nerve damage and no ankle reflex, my straight leg raise was only at about 25% and the pain severe. So what was going on? He said sometimes we don’t get all the information we need from the MRI and that there could be something catching the sciatic nerve somewhere. So it was my choice whether to take the chance and investigate with a 50/50 chance of success. I broke down and said just do it, I had done everything else.

I came out of his office and sobbed like a baby, I think it was a mixture of fear and relief all mixed into one. I knew I only had a couple of weeks to get in the right frame of mind; I had no choice but to do so. The operation I had was called a microdiscectomy. Microdiscectomy is a surgery that treats herniated lumbar disc. It removes part of the herniated disc in order to relieve pressure on spinal nerves. Before I knew it the day had come and I was on my way to theatre. I can normally remember every detail before I go under but I can’t this time. All I remember was joking around with my girls and the walk to theatre. Did my mind shut down on purpose?

It was over, and after a lengthy time in recovery (I was told) I was back in my room with my girls by my side; the nurses had given them pillows and blankets to make themselves comfortable. I felt relief in my leg immediately after surgery, a feeling I can only describe as euphoric. I know I was medicated but I could actually stretch my calf muscle in a way I couldn’t before. I didn’t see the consultant until the next day so I actually had no idea what he did to me. I was told that he barely touched the actual disc,( I discovered later that meant he shaved a tiny amount) but what he found was that a large piece of the disc had broken off from the herniation and calcified around the sciatic nerve restricting its movement. It was stuck well but successfully removed it and freed the nerve. Joy was the only emotion I now felt despite the long road to recovery I was facing.

Lessons learnt

We are always told surgery should be a last resort, but surgery may be the first port of call for some individuals. No two surgeries are the same even if they are called the same thing. I always thought an MRI would show everything but I know better now. I’m always learning.

Faith

For the most part of my life I have come across great doctors and nurses. Also great surgeons and surgeons that have failed to deliver. I have worked with therapists that know what they are doing and talking about and some not so much. One branch of the medical field I never really needed to question was the radiologists. They perform the scans, the x-rays, the MRI’s, report on the findings and send the reports to the consultant/doctor who requested them. You would assume they know what they are looking at. Well, well, well, what do you know?

After another challenging two months I recently had another MRI on my neck and back. When Collin and I sat down with my Orthopaedic consultant to review the findings, we were speechless. Directing our viewing away from the very obvious image of the neck and spine, my consultant pointed to an 8cm mass sitting in my sacral area! I felt instantly sick to my stomach. That’s not the crazy part, I told him to bring up my MRI from 15 months ago to see the changes in my spine, and there at the bottom of the picture was the same 8cm mass. This was not written in the previous report. As you can imagine my blood was at boiling point, not only did I now have to switch direction, as in treatment plan, I was now being referred for an urgent pelvic scan and another MRI because they weren’t sure what the hell it is.

So let me clarify a few details; 15 months ago the radiologist failed to notice the very large mass. Was that because the scan request said; back and sciatic pain, so he only focused on that area? Is this normal? Secondly the spinal consultant I had at the time who requested that scan also looked at those images and failed to notice. Is this because he only relies on the radiologists report? The recent MRI was done by a different radiologist, yet he spotted it. I am still in disbelief and of course I had to get to the bottom of this terrible oversite, life threatening or not.

Lucky enough the radiologist who performed my pelvic ultrasound was the same guy who failed to notice the mass in the first place. I couldn’t wait to hear his explanation. When the nurse told him I had some questions I wanted answered, he took me into his office for the explanation. This is what he told me; apparently I have 2 hospital numbers, so when he saw my file (the only hospital number he saw at the time) it only showed a few previous images. In that file none of my many gyny images could be seen so he presumed that the pelvic mass was a pelvic organ. Hold on just one minute, you’re telling me because he didn’t know I have had everything removed in that area, he couldn’t tell what he was looking at? So the second hospital number seen by the other radiologist showed all my gyny images and he knew I had had everything removed, therefore it had to be something else.

I counted to ten over and over again and had to leave in a hurry before I lost control of my faculties. Two days later when I returned for my pelvic MRI, I asked the receptionist in the radiology department if my hospital numbers have now been collaborated so this can never happen again. She told me that it wasn’t that simple. This incident set off what’s called a red flag alert and that all senior staff at the hospital will be having a meeting the following day to discuss the matter. My files will be collaborated, but it takes time.

Lesson learnt

Unfortunately I’m not a radiologist therefore I am unable to fully analyse images. But what a lesson I learnt this time. I thought I questioned everything. Clearly not.

Travelling with disabilities

Planning a family holiday is fun right? That excited feeling you get in your stomach as the day you fly out gets closer and closer. The crazy thoughts of forgetting the passports that keeps you tossing and turning at night. Well for me, my thoughts and anxieties go far beyond what you could imagine if you don’t have multiple health issues. I planned to take things slow the weeks building up to travelling but my sciatica kicked in and I was forced to.

These were the things my mind had to deal with. I had to request my apartment be on the ground floor close to as much as possible, to which the resort obliged with no hesitation. Of course there were many things not close by but we were able to jump on a small train which travelled around the resort every half an hour. Before I arrived I was thinking, what if the bed is uncomfortable and hurts my back? What if the pillow is uncomfortable and my neck freezes up? I remember a conversation with a friend before I left who understood exactly what I was talking about.

At all times I felt I was slowing everybody down. But I don’t think my family felt the same it’s not like we had to rush anywhere.

Booking the flights, how was I going to tolerate sitting for so long? Do I travel with my wheelchair or don’t I? Wheelchairs and sand don’t mix.  I pondered on this for so long. Who would push me if everyone had luggage? It all seems so complicated and I didn’t want to feel like a burden. When I did book the flights I requested airport assistance. I had no idea what that entailed at the time but I knew I would need some help getting to the boarding gate.

Well at Gatwick we were directed to passenger assistance. From here my whole family went through a shorter and quicker passport control, it would have been quicker if I didn’t set off alarms, get patted down for a pound coin I forgot was in my pocket and a lengthy explanation that my tens machine was no threat to security! I was then given a pager and told to report back to a meeting point when it was time to board. We were then escorted to the buggy and because there was no one else getting in, the family jumped in too. The distance to me felt so far and the gate felt the farthest away. I felt rather uncomfortable just rocking up in front of everyone who had probably been queuing for ages, but I sometimes forget It doesn’t hurt everyone waiting in a queue.

When we got off, I thought oh my god I’m going to have to stand in that queue. My family lined up but I was escorted to the front and checked in, and I was told they would join me shortly. We were also let on the plane first. The children thought it was great and indeed so did I, but I couldn’t help wondering what the people staring at us were thinking, only momentarily mind you… If I didn’t have that support I would have been broken and who knows how long I would take to recover from that.

At the other end I used a wheelchair to baggage claim, in a taxi and off we went.

On return was slightly more challenging because of the language barrier with some of the staff, but this time my family went through security and I was whisked off in a different direction! Feeling a bit uneasy, (foreign airport at a ghostly time of 05.00am) I wanted my family to know where I was. My aid said “just call them”! The signal was crap. So I’m sitting in the departure lounge on my own listening to my own breathing wondering if my family were worried about my whereabouts. After a good 45 minutes they arrived. When Collin asked where the hell they had taken his wife after they had come through security, all they said was “No problem over and over again” we laughed so hard. Once again we had priority and boarded the plane first. When we arrived back at Gatwick there was someone to meet me with a chair to escort me to the buggy. This time there were two of us, so I met my family at baggage claim. Interestingly on the way the lady with me asked the driver to stop and pick up her friend who was struggling to baggage claim. The only reason she was in the buggy was because the driver was kind enough to pick her up. She had no idea that you could book assistance through the airport.

The last evening of my holiday, I had a serious setback. Our last meal out, was an excruciating experience, but I ate and left the restaurant with one of my daughters. On returning home I have had a relapse from hell. This is the end of the second week home and every now and then I forget how bad the pain can be. My emotions have hay wired…How can one be so happy beyond belief and the next feel like you can’t live one more day like this? After all these years I don’t think I will ever get used to it, or even try and understand.

 

Lessons learnt

 I haven’t travelled out of the country for a while with the conditions I have. Not knowing how you are going to feel from one minute to the next played on my mind continuously. If you are travelling out of the country don’t hesitate to ask for help. But make sure you request it when booking your flights.

Fight or flight

Yesterday an incident occurred that shocked my system into throwing myself out of bed without thinking of the consequences. My child needed me, I heard tears down the phone and my body reacted. Only moments before that call I struggled to get up (I had already been on the school run which done me in). Only now I’m thinking and pondering over how fascinating the human body is.

When we experience excessive stress—whether from internal worry or external circumstances, a bodily reaction is triggered, called the “fight or flight” response.  This response is hard-wired into our brains and represents a genetic wisdom designed to protect us from bodily harm. This response actually corresponds to an area of our brain called the hypothalamus, which, when stimulated, initiates a sequence of nerve cell firing and chemical release that prepares our body for running or fighting.  Chemicals like adrenaline, noradrenaline and cortisol are released into our bloodstream. These patterns of nerve cell firing and chemical release cause our body to undergo a series of very dramatic changes.

Our respiratory rate increases.

Blood is shunted away from our digestive tract and directed into our muscles and limbs, which require extra energy and fuel for running and fighting.

Our pupils dilate.

Our awareness intensifies.

Our sight sharpens.

Our impulses quicken.

Our perception of pain diminishes.

Our immune system mobilizes with increased activation.

We become prepared physically and psychologically for fight or flight.

Increased muscle tension in order to provide the body with extra speed and strength.

 

The reason why two of those points are highlighted is because to me they are relevant. Over the last few weeks the sciatica has restricted my movements, and my fibro blew up, let’s just say I have had better weeks than this. But when I flew out of that bed jumped in the car, not even remembering the journey to school, I don’t remember feeling any pain. I don’t remember feeling my sciatic nerve being crushed against the seat as I pressed the accelerator, I don’t remember my neck feeling stiff when I looked left and right. All I do remember was dealing with the situation like a boss.

As I felt my body fall into a sense of calm once home, I could feel every god damn muscle in my body screaming at me.

Good old hypothalamus hey, at least something’s working 😉