A crossroad?

Well here we are again, writing my blog. I hope you’re sat down and enjoying your day whatever you are doing. So without further ado here we go………..


How have things been you ask? That seems to be the age old question which I get asked on a daily basis, most of the time the answer in which I give is, “yeah, I’m okay, each day at a time.” Let’ try and break that down, what does it really mean? To me it means that I am asked this question, all the time, I will put on my brave face and tell you what I feel you need to hear. Now is this the answer which I should be giving, most likely not no, but it is the one in which I want to give right now.

I am writing this blog from a place I can’t really see nor understand where I am. It is hard for me to understand where I am and where I need to go. The way I am feeling, to be honest I am not sure what kind of place this is? I am trying to hold things together, just in the best way I know how.

I look back over the last 6 months, and I can see that I have made some massive improvements, some that others thought might not be possible again. While this is a big achievement, it is hard to see the way forward? I know I should never compare myself to anyone else, but I do, it isn’t something I can help. I look at them around me who live a relatively normal life. I understand that everyone has day to day problems going on, but I see others going out, into town, out with friends etc and right know I am jealous, I want that to be me!

Which brings me to friends. Friends……they are something which is hard to come by now. I used to have a very active and social life, with lots of friends around me, but where are they now? Do they call? No. Do they send a message to ask if I want to do something? No. Do they just pop in to say hello? No. I can count on one hand how many people do this right now, which is very sad.

I look at things now, and I HATE having FND, everyone tells me, “don’t let FND rule who you are” guess what? It does, it defines who I am right now, I have lost soo much in such a short space of time, and while I do feel that I am making progress, I don’t feel like it is quick enough, I want everything to be okay, yesterday! But it isn’t! How do I find a way forward when I have all this going on around me?

I spend such a lot of time on my own, which doesn’t help anything, or anyone. I can spend 10 hours a day on my own, 4 days a week, that’s 40 hours a week all on my own. No one to talk to, no one seeing me, just me on my own.

I can feel myself slipping into a place which I really don’t want to be, I have contacted the people which are meant to be able to help, and guess what……to get to see someone face to face, its 28 weeks, 6 MONTHS!! How does this help anyone, it surely doesn’t help me!

Anyway on another note, I saw the neurologist this week, who is going to help (Hopefully) with dealing with the pain that I am in, he has sent a letter to my GP with some advice, on the amounts and medications I can be on. This is turn should help me in the day time and help me sleep for a full night, which I hope will give me a better outlook of life at present. I also have my appointment down in London next month, I am hoping just for some advice on things I can do to help me living with this disorder.

Anyway until next time!

Stay Safe

Matthew

2 thoughts on “A crossroad?

  1. I know what it’s like to live with chronic ill health. But gratefully, I came into something that has been helping me and thousands of others around the globe, with all kinds of health problems. You may read about it on my recent post. Wishing you well.

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  2. Diagnosed with NEAD since Nov 2018. Before this I never heard of it.. never knew of such a thing existed.

    Aug 2018 I had lost control of my right arm and weakness in my leg after having consecutive attacks lasting approx 6 hours. Those days I was having 4 attacks a day last from 40mins to 90 mins. And I had no idea what was going on. Hospital treated me like I was faking it and no one understand my condition. They all thought I was acting up and kept asking me if my husband is abusing me…and me in my head screaming No!!

    After my diagnosis I was left with a load of drugs and my depression and self destruction for 9 months before any therapy started with my neaurospycologist who is a specialist in NEAD.

    My marriage was destroyed and my kids psychologically damaged. My GP destroyed my confidence every time I was honest and open with my feelings and struggle’s. She began to patronise me. I was left humilited and insulted my the only.medical professional who was offering me any kind of support intially.

    No one absolutely no understood what I was going through. Friends, family, even my husband and kids. Everyone turned victim to my condition , thatwas hard to come to terms with.

    I have been seeing my neuropsycologist regularly now for approx 3 months. She is helping me reconnect to the cry from within my body. She is helping me understand the difference from what I think is normal and shows me what actually looks like normal and healthy.
    I am begining to understand understand where I sit and were I need to lean to get to.

    Marriage got better after going through hell and back several times. And my kids as traumatised as they are are settling into this new way of our life.

    It scares them when I fall into the paralysis or the moments when I am driven to screaming like a crazy banshi when I struggled to communicated and I am in extreme pain from discomfort and in an incapacitated state.

    Since my 1st symptoms began to appear in May 2019 life had been an endless struggle. No support service out there was willing to help me and passed me from pillar to post.

    And now a year on my attacks are not as frequently as 4 times a day but life is just as frustrating every single day. I feel trapped . I do all I can to be more mindful of myself and I am under normal pressure’s of life but now I am not able to cope with the day to day living activities without consequences to my physical and mental health. My condition feels very crippling and debilitating to quiet a degree.
    I can no longer cope with independently caring for my kids for too long. And I had to resign from my job of 15 years .

    I’m on the search for a new purpose to my life that can also deal with my new found limitations.

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