aside Living with An Invisible Illness

B12 deficiency is a disability that no one sees. Here is my story in one blog and I hope it helps one person as when I was seriously ill and thought my days were numbered, I had no one to talk to, no one understood and the doctors were in denial. Now almost 3 years later I am angry at what might have happened to me had I not kept on finding my own personal strength, forcing myself to carry on and pray that an answer would be delivered if I just believed enough, in what? In what I knew and was subsequently discovering.

So, B12 deficiency itself can kill. Pernicious anemia which WILL kill if left untreated, firstly leading to a likeness of dementia in all ages, is a B12 deficiency that cannot be recovered by diet alone. One can live side by side the other but they can be exclusive and individual conditions too, the former being curable and treatable with diet and or supplements.

Once I had been an active girl, young woman, 30 something with a zest for life that people said “I’ll have what she’s having”. Then alot of bad things happened and I got weak, my stress levels depleted, my body became lethargic, my zest for life was failing but I was a fighter, these physical outside attributes would dissipate one day soon right? Then life and good times would resume. Wrong. My body was suffering and I had no clue. By the time I discovered this had been creeping up on me for ten years or so and was hereditary and could have been diagnosed and dealt with much earlier, it was too late.

At 33 I had gone to the doctor and said, I feel…… funny, not myself, yes we lost our home in the recession, we were on the brink of poverty, one of us was out of work and the other not far off, finally taking redundancy with a whole department. Life was slipping away. You know what he said ? He said “You’re 33 years of age, what could you have to worry you so much?” and that was that! Actually, it was an early symptom of what was to destroy me 6 years later. ( I see him still and he sees my history and I swear the way he listens now, I feel he knows he let me down).

The day came when we needed and wanted our old lives back so turning away from the life we had developed and fallen into which was dark, we worked hard, moved house, did crappy jobs, saved every cent, got cars, one each! Still lived in poverty but at least we had an honest roof over our heads that we were paying for after squatting for 5 years in a bank repo (actually legal) we moved to a more desirable lifestyle, a home in the country, with simple pleasures, it gave us the extra umph to grow again. We started living life again and then suddenly, it was all almost snatched away by this illness I had no idea I had.

At 39 I had not been in my new job 3 months having quit the year long sales job I had done 6 days a week, many days involving minimum 12 hour days, sometimes being a 16 hour day with a pay packet that didn’t match the effort, so I took another job, a job I loved, with far less hours and greater rewards. Life was good. I felt a bit funny shall we say, I thought it was early menopause which is also common in our line of women folk. It was not. I had blood tests and my B12 count came back at 112. In China the lowest safe level is 500. In Europe it’s around 220. So at least it showed something. I was prescribed a weekly injection to start right away. I had one. 3 days later my body went into shock and the symptoms were sudden double vision, unsteadiness, bad gait, tingling down my arms, short breath, buzzing, nerves on fire. All developed in the space of half an hour after that initial snap of vision failure which coincidentally i got a herpes in my lip which lasted only 5 minutes.

I got myself to the local emergency but in my confusion I actually ended up in one 15km away instead of the one within 2km. I was admitted immediatley, tested for heart attack, stroke, my face was fallen, my speech had gone all wierd and my sight was getting worse. I was transferred rapidly to the general hospital for more tests and monitoring. Later that day I was sent to a ward and admitted. I was given an eye test, they checked each eye and said they each had perfect vision so nothing was wrong there. They had no explanation for or offered any solution to help the double vision. Slowly my sight struggled, the eyes fighting each other, I lost sight to anything further that a hand away. The nurse gave me a patch and said to swap it over from time to time. This helped but it was a big gauze and some sticky tape so I called my husband and ask him to go to the pharmacy and ask for some patches, they came as stick on ones which after wearing for weeks damaged my skin but did help my eyes which of course is more important. I cannot imagine losing my sight permanently, the following few weeks felt very close.

2 days later I was transferred to the high dependency ward. I was terrified. the nurses were unsympathetic apart from the odd one who i wished did not have to take time off. I had a drip in my arm that I complained of and no one listened until a kindly nurse agreed to look and my arm was black with a bent needle stuck in it, i cried and she nursed me and changed the place she put the new drip in and checked on me. I had developed arthritis in my spine, another lasting effect of this deficiency which was not yet properly accepted. The specialist I got came almost daily but refused to listen to my questions, he just did test after test, painful, distressing tests but i accepted they were necessary to discount brain tumour, brain cancer, MS, Parkinsons, who cares what else, I was fatigued and broken, the tests were endless. I went for an MRI and begged to be calmed first as I am claustrophobic and knew how important it was, i did not get any calmness and when I got in the machine i freaked like a small child being shoved under the stairs. Completely irrational and uncontrollable no matter how much talking to myself I did.

The next day, a kindly porter came, blind folded me, put ear plugs in and pushed my bed all the way down to the MRI suite, the man there spoke gently and ask me to count to 1000 and it would be over and to remain calm and count. I counted really slowly like this one hundred and one, one hundred and two etc…. i got to 788 and was out, he told me i had been in there at least double and congratulated me on my slowness. He did not realise i was slow now, my brain was slowing but it was not something this scan was showing. I could barely speak properly by day 3 or 4, my letters were all wrong, i could not find words in my head that would work in being delivered from my mouth and by now of course i have been googling symptoms and having the doctor shake his head. I asked “why do you vehemently disagree i have bells palsy as a symptom?” he said “it is plausible but you have one symptom missing, your eyes close” I said “they do because I am now wearing a head band across them to tie them shut!” He gave me drops.

After 2 weeks they said I could go home for a weekend treat, a woman came to me and said “oooo, they only normally offer this if they think there’s no cure” Geez!!!

So i came out of the hospital walking all over the place, banging into everything, feeling like I could collapse under my own weakness and got out into the sunlight with dark glasses on and was immediately blinded completely!

Monday morning I returned with my own bedding as suggested and some home comforts. I was scared. They started to do a lumbar puncture at my bed, I sobbed and it hurt, they said I was a baby and left me there for hours, alone with no communication and unable to move. 9 hours later after no food being offered all day and no explanation i was taken to surgery and i got the best people ever! The nurse caressed my hand and spoke gently into my face, understanding my weeks of fear becoming terror at the unexplained disintegration of my body and mind whilst 2 surgeons gave me a small anesthetic and proceeded, each talking softly and asking me how i was doing. My husband stood outside peering in the whole time, I was so scared I could not have even gone there without him by now. After midnight the surgeons came to my bed in the ward to check on me, how different they were to the specialist who refused to listen to me.

I asked my husband to bring in the B12 vials, he did and I said to the specialist Raphael, i need these, my count was 112, this has happened and is happening to my body and brain and in 3 weeks I have done enough research to know this could help and if it doesn’t then it will neither do any harm. His response? No! You will have what I say and nothing more whilst you are under my care. GOD HELP ME!

3 weeks later he discharged me stating it must be an unknown virus that needed to travel through my body and I could have medicine for parkinsons to treat the nerve damage or go without, the pain i felt, i took the medicine option (which had me back in another hospital a week later as the side effects caused even more pain, more agony and I thought I was going to explode). This Doctor, Raphael had also told me that until I saw him next i was not to see my family doctor, not to take any other medicines and he would see me in 8 weeks. I was a train crash, my weight had plummeted as my throat had tightened so much I could not swallow, I could not chew as my teeth felt loose, my mouth wouldn’t open because of the bells palsy symptom of a B12 body crash and what did he say? “at least you are losing weight” and smiled! What a complete ****!

8 weeks went by, i had returned to work as soon as i could speak albeit i spoke funny but it was endearing and sounded like I was considering my next sentence instead of in reality i was word searching. I looked at people and it would take ten minutes to remember their name, this still happens. It took me 5 minutes to say “COKE” in a fast food place when asked what I wanted to drink and I had asked my husband to stop filling in for me or my brain my have just shut down and given up.

What no one could see was my body was still in nervous shock, my hands felt like they were on fire, no one could see i was so inable to move my joints it would take alot of imagination and time to dress in a morning, getting in the bath was terrifying in case I could not get out which often took time and I fell a few times. My husband refused to install handles as he could not “see” my illness. Then again, I never pushed as I do have my pride. (stupid)

The 8 weeks went by.. No appointment, i drove to the specialist hospital, “you have to wait” they said each time. My face looked as though i had botox, i don’t know why but something strange happened. I was frozen, this was the bells. This was the B12 deficiency.

I was bullied at work by my supervisor, her boss seemed to think it was ok, her colleagues turned a blind eye and I was pushed out emotionally from the group. The more this person said, or did not say as in austricising me, the lonelier I became. I fought back don’t get me wrong but it was exhausting and drew so much of my energies just to survive. I was undermined and ignored then i was threatened as my confidence had fallen so much i was no longer functioning properly at my job and no matter what I said, it was brushed aside. I had a medicinal puffer i had to use 3 times a day for 6 months, I went to get it from a cupboard she had made me put my handbag in and was told to sit down, I explained and she said “tough”. This actually made me stand up for myself, there was no way I was not having that medicine!

I said “you know, you really have to stop this as I hurt so much” she said “yeah, I know, you cry hahahahhaahhah” That day, her colleague got fired. The bulliest of the lot of them was saying to me, ” It will be me next!” ” With any luck, someone will come along and see you for what you are” I thought. I just couldn’t understand the audacity of her or some of the others after what they had done! As it turns out, I can’t actually have been so terrible at my job as I won the top award that year at the prize giving evening, my stats were high. Who knew? Not me for sure because this horrible, cruel bullying woman and her side kicks had tried to knock me down when they knew how weak I was. How I got up everyday was a miracle in itself, I am sure I should have chucked it all in but what was that going to achieve? I had my husband and my dogs at home who needed me. There was a whole other problem at home that many would have given up on and run away from but that’s not me, no matter that those who should have been supporting me turned a blind eye and took no responsibility until much later and one day they were forced to. The same people who never once enquired into my health, like I’m a hypochondriac or something, or maybe they just don’t care. i will go with the latter here.

4 months after the specialist told me not to see my gp, i hurled myself in there and begged him to reinstate the B12 injections, without hesitation he prescribed one per month. It was a start. 3 months later i got the specialist appointment – 5 months later than the promised 8 weeks and 7 months in total since the hospital discharge. My fortune changed that day when Raphael had called in sick and Miguel Angel saw me instead. I had gone armed with a translator so there would be no mistake of what I need to say, I paid 20 euros for a letter to be properly translated so my Spanish language would not be blamed for my my lack of full explanation and this letter said I was handing it in. It no longer mattered who needed me, why I was here, I didn’t want to live with this pain and distress anymore. Miguel spoke English. He said ” You need B12, I looked at your blood tests, you are below 100 and this is dangerous!” I said “really? You get it?” , I shrank into my seat and sobbed with my friend holding my hand, this man understood and made moves to help me. He immediately prescribed B12 injections weekly for a year and ordered appropriate testing in my stomach, which was like something out of Jurassic park on the day but i went through with it. I went back to my GP and gave him Miguels prescription and treatment commenced.

By now, getting up, feeding the animals, cleaning the house as best as my body would allow, going to work, pushing through and sleeping became my ritual of life. My friends had dwindled, no one understood and I sounded like a moaning minny so i stopped explaining and withdrew, refusing invitations, sounding like a boring old lady, becoming fearful of life. Turning down work do’s made me sound like a saddo I know but where do you begin to explain when all you wish was that you felt well enough to get out there and enjoy the normal things when you look no different because your illness is coroding from the inside out?

After a year, many other terrible events had happened which landed at my door, a promise to a friend who passed away. A much bigger case of anger in someone I was caring for, but at least my brain fog was starting to clear. I was getting my own mojo back.

During this time, at work, I cracked one day and was moved after a new head of department saw the distress I was in. I didn’t tell him everything, just enough to be moved and get a new lease of life, it wasn’t the best move in terms of productivity but it saved me. Now I am back where I started and it’s ok, life at work is now ok.

Now, I have fortnightly vitamin B12 injections which help my body and mind, Raphael never accepting what he had done nor taking responsibility for his ignorance and incompetence. Had he been more open and not looking for obvious sinister diseases, I may not have lost my mind, my memory, my sight for so long (it took 2 years to go outside without dark glasses on) now i am advised I must never go outside without dark glasses (precribed privately by a proper eye doctor) I will always have double vision, another specialist privately i have to see for special prisms and 3 different sets of glasses. My spine may have healed quicker but now never will, my nerves may have been save a little more, they will never be 100 per cent, my fingers have little sensitivity. I may not have almost lost my life to the illness or indeed the latter effects that made me wonder how i would carry on living.

I thought i was through the worst but recently a family member really upset me because of his selfishness, i got in my car and was almost sick as I realised that i had just thought that I could stop this anguish and end it all. Who does that? I have a loving husband and i have my animals who need me. I have friends again and I am starting to live. So how come a persons cruel tongue can distress me so much? So now I am tied to medication to control this anxiety. I don’t take the prescribed amount, I take far less, I listen to my body and I follow it when it says it needs a little help. This happened in a week when I had no medication.

I am a joyful, positive, creative and giving person, i love life, I care about others and I have great ethics but I wonder if the damage this ignored invisible illness will ever be ok enough for me to do it without the extra medication, to not have so many B12 injections, but if I need them to be me, then that’s how it’s going to be. I need to retain the self confidence I taught myself very young out of need and speak up if someone is pushing me around in a situation where it is not acceptable. Perhaps that sometimes brings me across as something I am not but in the end, the torment and the ignorance shown to me makes it very hard for me to trust so in the end I have my life on my mountain with my husband, I have the love and joy of my animals, I have my sanity back and I accept invitations if I think the company will be nice or if it’s an opportunity to try and make new friends. I will never stop giving and am lucky to have friends who have an animal charity who welcomed me into their fold when I needed them and they have enjoyed the social media help i can give them, some mornings I get up and get in my car and go to them just for a coffee and a chat about any old tosh just so i can start my day knowing that someone opened their heart and welcomed me when I felt so alone.

When things are asked of me which are not in my capability without my visioning more stress than I can handle, I say no, this took a long time to learn. When someone is my friend and does not share i find it insulting.

What’s my biggest obstacle I still need to overcome in life? Rejection, in it’s many forms.

I am learning. It is the final hurdle to my personal peace.

Thank you for reading. If this helped you I am happy. If it could help someone you know, send it to them. In any case, I feel better for writing it down.


Karoline Simone

There are invisible debilitating illnesses, if you’d like your story told, please fill out the contact form. Sharing is halving. Anonymity assured if required.

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