I remember when the pain I had on my right side of my face hit, how I made a diasgnosis of TMJD and read around and saw Trigeminal Neuralgia and thought, Thank fuck I don’t have that. That would be endgame for me. It looked awful, it reads terrible and I wanted no part of it.
Then I got the spasmodic attack to end all attacks
I was on my bed screaming for all its worth, I was drinking ice cold water, couldn’t be warm it made it worse, I could barely breath through the pain, I was going to the bathroom every 20 minutes I was drinking so much. (talk about your detoxes) I didn’t eat in 4 days, I overdosed on painkillers thinking it would alleviate the pain. (you throw up before you do serious damage, unless you really want to commit suicide) I live on my own, and I was crumbling mentally, thinking that I could go on no more. I had at that point decided on how to off myself. Valium hadn’t even worked to chill me out. I wasn’t climbing the wall, I was crawling the ceiling.
Then the diagnosis cam and it was the illness I had firmly placed in the DNW pile. I was in so much pain I welcomed it. Then I got put on meds and a million and one other concerns came up
- Liver panels to make sure my liver is handling the meds and isn't having issues
- making sure I take my three pills a day at regular intervals
- reducing stress so as to not aggravate it
- being closely monitored by the doctor to make sure I'm not having to many problems or side effects
- Cater my job search so as not to pick horrifically stressful jobs (I will write the telesales debacle one day)
- Living on £55 a week because I had to leave work
- Monitoring each day for pain levels
- Cancelling dates because I was up the night before in pain or because at some point pain has monkeyed with sleep patters AGAIN and I haven't the energy to go out
- Researching treatments both short and long term for the illness
- weighing permanent damage to the nerve that is causing the problem over neurosurgery and realising neurosurgery was actually the better option.
- Looking at radiation therapy as an alternative if neurosurgery was a no go.
- Being limited in what I could do that day dependent on pain
- being able to give people a four stage plan of pain concerning my illness;
- Minor Pain - feels like I spent the might grinding my teeth
- Mild Pain - Electrical pain in my teeth whilst a post punched feeling occurs
- Moderate Pain - Someone is drilling into my skull (typically just in front of my ears) My teeth are jacked into the mains supply to your house
- Severe Pain - Someone has taken an acid drenched chainsaw to my face, whilst jacking the nations electricity supply to my teeth.
- Realising that Denial really isn't just a river, or it is, it just runs directly through me
- Knowing that there was nothing that I could have done to prevent it - but still feeling guilty about it
- Feeling as though I am a faker - even in the midst of an attack
- Feeling as though I can not ask for help or hugs, because that is attention seeking and "Pity Party Behaviour"
A few weeks ago I had a call from my revenue officer about my rent. I could barely talk, my head hurt so much. I had to explain it to her. She stopped me and with a knowing voice asked completely unrelated questions. At the end she explained her mother had had the illness. She referred me to an in house adviser on money, who I spoke to today. Her name is Grace. She went over what my illness was like, at the end she simply said; "Have you ever thought of applying for Disability Living Allowance." I replied with " The knowledge I have about this illness, is knowledge I have done myself - sure my doctor gave me leaflets, but by that point, I knew more than those leaflets told me. Is it a disability?" She was silent, and then she said. "Yes, it is. It impacts your day to day life." So she is helping me to apply for that
Even at it's most basic I am £40 per week better off financially (at its middle it is possibly £60 and at it's most it is possibly £95), I also have a bit more support getting back into work. When back in work I have more support and also I continue the DLA - That is for however long the illness is (In my case the word, incurable, is bandied about with wild abandon by the medical people)
I think the biggest thing that really happened today is someone actually said to me, THIS IS A DISABILITY. If a stranger had it, I would be advocating for them to get all the help they could get. ~Not to "Screw the system" which is how some people may look at it, but because it is a debilitating illness when it is really bad, and you need help in some manner, even someone to come help you out with the domestic stuff. I haven't wanted to admit that, I think pride has been a big part of that. So today I have felt that by admitting I have a disability I felt like I was giving up on myself, on my future. Part of this is because of my father - who was disabled, and did just that. Gave up. I won't! I can't! I have more than *waves hands about* this to live for!
I have however cried my eyes out today, realising that I am never going to be the old style normal. That this is the new normal. Now I have to get on with it. Does everyone go through this phase?