What a terrible year.... (off topic)

[MoxieGirl]

Hello wonderful people. 

Life is a bit overwhelming at the moment, as it has been a horrendous year. I thought my year with a 7 month headache + migraines + clusters was a bad year. Then I thought my year of 2-5 clusters every other day, was a bad year. Neither of them stack up to this year, although it is a different kind of terrible.

So, I hope you don't mind a little moan.

The year started with my best friend & housemate being diagnosed with Motor Neurone Disease (a.k.a. ALS). Her disease is progressing fast, in December she was able to walk on crutches, by February she was in a wheelchair. She now has an electric wheelchair and will soon be getting a computer that will follow her eye movements to select letters and speak. Between you and me, I think this is going to be her last Christmas. And she's only 45. 

In March, our landlord told us he was going to put our home on the market. If he finds a buyer, we'll have 2 months notice. However, it is nearly impossible to find a place to rent that has wheelchair access, a downstairs bathroom and bedroom AND accepts pets. Where we live in England, that is nearly impossible. Thankfully though, our landlord hasn't sold the place yet, and he has the price to high so that it won't sell, from what we can gather, so that he doesn't have to kick us out. We are hoping that remains the case for a while longer.

In April, my IT contract ended with a company I'd been working for, for 3 years. And it paid really well. Because my best friend's condition was degrading so rapidly, I decided to not rush into another contract until we had support lined up for her. We were about out of money 2 months ago, even more so last month, and are on the verge of being broke this month. Rent is late, other bills are late. (But, I started a job this week - more on that later).

May - July was all about supporting my friend, and watching one muscle after another stop working. 

At the end of July we finally had professional carers coming in daily to help provide care. It took a bit to get it all settled down and working smoothly, but it finally allowed me to get a job.

Last week I interviewed for 2 jobs. The first job, the one I wanted, paid around £500 A DAY! That would have resolved all our financial problems and I would have been debt free in under a year. The second interview was for a job that paid a whopping £120 a day (1/3 of what I was earring 6 months ago). Also, this job is an IT entry level role, where I was in my carer 20 years ago! Of course, you know which one I got!

My first day of work was Monday, on my birthday. It took all my strength to go to work that day. I was hating myself for not getting the other job, hating the huge backwards step in my carer and massive pay cut. Well, I was living on benefits at the time, so I suppose a pay raise, but you know what I mean. Anyway, I'm feeling better about it all now (Friday). I've let the other job go, and started getting in this job this week. It's what I need to do right now to pay the bills. So I do it.

And then, there is a list of little things. 

March was the end of my 3 year contract for my car. A car that I loved more than any other I've owned. But, it was too low for my best friend to get in and out of easily, and the doors were big and to heavy for her. Plus, didn't have much space for a wheelchair. We needed a bigger car. So I went to the dealership and traded in my car and got an SUV. Wheelchair fits fine, and getting my friend in and out was much easier. But now she's progressed so far we rarely go by car. She has an electric wheelchair that can't be easily lifted and put into a car, so we go by bus most of the time. We're looking into one of those vans you can drive a wheelchair into. 

I'm a little gutted that I gave up my favourite car and increased my loan payment by £100, and now I don't really need the car I got. The thing is, stuff like this isn'y anyone's fault. It's the damn MND. 

I haven't mentioned my best friend's daughter, who also house shares with us. She's being bullied at work by her boss and not allowed to take time off for doctor appointments for her mum and stuff. It's becoming a bad situation.

My migraines have been horrific this year. I've been waking up with a migraine 5 nights out of 7 for the last year. They normally go away in a couple hours after taking triptans, but not a great way to wake up and start your day. Somedays it was all I could do to get a drink and the pills and go to bed with as little head movement possible. Then I'd lay perfectly still for a half hour till the drugs kicked in.  

Those are the highlights of this year.

On the good side, my friend's daughter got engaged. Today I got a letter from a publisher that wants to publish my book - which is AWESOME. 

Every day I keep thinking that surely, things will turn around soon. But a day, a week, a month goes by and life just gets worse. 

Really at a loss at the moment on what to do. 

Not so Moxie, Moxie Girl

[RoseCampbell]

What a horrendous year, I'm so sorry for all you and you're friend are going through.

As a person with a disability from illness who knows how rare it is for people to stick around, I must say: YOU ARE AWESOME!! What a humongous blessing you must be to your dear friend.

I'm sorry about your car! Boo! We traded in my convertible mustang for an old police car for very similar reasons. Very pretty car, to car painted with spray paint. I feel your pain.

Migraines are hideously exhausting when they are daily like that. If your migraines are mostly one-sided; Have you tried a trial of Indomethacin just in case it is more than migraines? It is believed anyone with chronic migraine should try Indomethacin, but so few neurologists actually do. My multi year chronic migraine turned out to be HC, which is diagnosed by and treated with Indomethacin.

My hubby also just had to take a huge pay-cut. It is so tough! I'm sorry you've been through such a financially difficult time, and still will be pinched even with the new job. I hope it turns out to be enjoyable, less stressful, or at least full of great people.

Sending feelie-better vibes.

 

[Dallas Denny]

Hi MG!

Good grief girl....sounds like you've been experiencing some that "just when you think you're cookin you find out you're sticking to the freakin pan"

Positive thoughts sent from this side of the pond to both you and your friend!!

DD

[MoxieGirl]

Thanks guys,

Rose - I have used Indomethacin before, when I was getting rebound headaches from taking to much Anadin, it was an alternative that helped with the headaches. But, all it does now is make me sick to the stomach.

My migraines run in the family, and I've had them off an on forever. Some years I'll have as few as 3, other years 100+. Sometimes they last up to 7 days, most of the time I can get rid of them under 2 hours. I also have chronic daily headaches, and it can be tough telling a headache apart from a migraine, so I often just throw a handful of anadin and triptans (eletriptan or zomiltriptan) at it and hope for the best. If that doesn't work, sometimes migraleve does (a combo of paracetamol and codeine), and if that doesn't work, by day 3 or 4, I turn to the vodka. 8-10 Shots of vodka, and I'm right as rain the next day, no matter how bad the migraine was.

Mushrooms help the migraines as much as they do cluster headaches, but all of my last batch of shrooms went to my best friend to help with her depression and muscle spasms associated with MND. Her needs are more than mine at the moment. But I should have a fresh crop soon, and plan a couple good busting sessions that I hope will put an end to the migraines for awhile. 

Clusters are coming back again this year. I normally have one or two a month, but they are so mild and short (less than 5 minutes) that I barely notice them. The last few weeks though I've been having worse ones. 

Oh, and I did some research on the company that wants to publish my book this morning, and they are rubbish. A vanity publisher only interested in taking my money up front. So, back to square one.

Just when I think this year can't get any worse, it does so in a spectacular and unexpected way. 

MG

[ThatHurtsMyHead]

Sending you Love and positive vibes MG.  Wish I could send more.  Sometimes the best things in our lives come right after the toughest.

PFW,

J

[spiny]

You have had a rough year girl. Hugs and positive vibes coming from here too. Just wanted you to know that I was thinking of you.

Glad that you are having a successful grow this year! That is a help. That sucks about the publisher!! A better one will come along soon I hope. You have worked a long time writing that book!

[MoxieGirl]

J & Spiny,

Thank you both. You have become good friends, and are good people. As is everyone I've met here. I would be long dead if it wasn't for this forum, and I think you for your thoughts and support now. 

What's frustrating, is I can see several solutions to my finances, all just around the corner. I have a sci-fi book ready to be published, and a book on the lottery (the one mentioned above). I also have an invention I'm working on with the aid of a local business support organisation. This invention has the potential to make Billions! It is a product that could be sold world wide, and something everyone would love to have in their homes. 

I often feel like I'm standing on top a gold mine, but with no shovel to dig it up. But, I'm slowly moving these projects forward, bit by bit. What I need is an investor to really launch them. 

Love you all,

MG

[RoseCampbell]

Constant head pain + financial woes. It's a craptastic combo.

Wishing the best for you, or at the least, less of the worst.

[ClusterHeadSurvivor]

Moxie, I would never try to Trump your year but know that you are not alone, Your struggles are real and tough. And with all I been through myself. I find myself falling 7x nd getting up 8. It makes you far stronger, far more able to keep moving forward. I pray for you to have pain free days ahead. No matter how hard it gets, always stay positive.

Pain Free Wishes

[MoxieGirl]

Thanks Rose and CHS for your kind words.

I've been at my new job a full week now, and it is slowly eating away at my soul. The people I work with are lovely, absolutely fantastic. And the work is not difficult, in fact I'm teaching them as much or more than they are teaching me. It pays OK, and is a job. So, really, honestly, I have nothing to complain about.

OK, it doesn't excite me, and fills me with dread. I sometimes find it difficult to explain to people that I find repetitive, non-challenging work EXTREMELY boring. And I find boring, repetitive work to be extremely stressful. I must have challenges, I must have things that force me to think and work out problems. 

I have been feeling sick to my stomach lately, with no appetite and constantly on the verge of tears. For me to have no appetite, that is truly saying something. My housemate fixed a lovely chicken kiev with delicious mash potatoes for dinner, and it is sitting here beside me and I just want to be sick. The thought of trying to eat turns my stomach. 

Something has to turn around soon. Life has to start getting better. 

MG

[CHfather]

Moxie, I'm sorry for not responding sooner.  Been hectic here (mostly very unsatisfyingly hectic).  I just want to wish you the best for a quick turnaround.  You are so resourceful that I can't imagine you not making that happen.  I remember your science fiction story (I think you must have pasted or attached a chapter of that here in the wayback days -- maybe even before you got christened as Moxie Girl).  It was really good!  I'm sure your other writing is, too.  Of course, being so empathetic and supportive toward your friend with ALS has to be extremely draining, emotionally as well as physically.  Your many friends and admirers here are pulling for you.

[RoseCampbell]

I can understand how a mind numbing job would eat away and be more stressful. With frequent (chronic?) pain, one must have something to occupy one's mind with to keep pushing through. Otherwise, mush.

Nausea is rotten. So sorry! Try tempting yourself with a little something sweet. Sometimes, that his enough to make it possible to get down a decent meal. Then be sure to rest for at least 1-2 hours to keep it down.

Have you heard of ketones? If you don't get in enough protein and carbohydrates, your body starts to eat reserves, then, it spills ketones. It make you feel extra flu-ish.

Baby yourself, take extra care! Thinking of you--