Blogmas 17 … lazy (painfull) Sunday

December 17 … week week till the Holidays

So today I had a day off. Yesterday was a bizzy workday but a great one. Like every story I have to post, I have some terrible pains everywhere.

If I work a day, I need a day to be at home and do nothing. Just laying in bed, and sleep.

But today my family had some more plans for today, so it was a very hard day.

Now it’s 8pm and the pain is just killing me, even while I’m writing this blog. My hands are thick and I have a terrible headache.

My plan for this evening was to write a blogmas about my favorite songs, but that I just can’t do at the moment. This autism girl wanted to write a blog tonight so that’s what I’m doing right now.

Tomorrow I have a day full of plans so I hope it will be okay and feeling better tomorrow.

So pain, what kind of pain do I have?

  • A lot of pain everywhere in my body and some tender points
  • Spots where I have more pain and more pressure
  • Fatigue (all day long)
  • problems with sleeping
  • a lot of concentration problems (not knowing what day it is, what I have to do or what people told me like 5 minutes ago in the store)
  • anxiety and feeling a bit of my “old” depression symptoms feeling coming back
  • every moring I have stiffness
  • numbless and tingling everywhere like my hands, knees, legs, arms
  • migraines, headache one is just over and I have another one
  • problems with my stomach
  • painfull eyes
  • and bigger neck lymph

Dr. Google?

Like many others, there’s always dr. Google. Not a good idea, because I’m freaking out when I’m searching on those symptoms.

I went to my doctor for a test to see if I had rheumatism or not. The results were negative. So he gave me some more vitamins, magnesium and iron tablets. I had to take them for a month or 2 months.

But now after a month I don’t feel any differents. It’s so sad that I have to say that the problems are getting worse.

Fibromyalgia

After searching on those symtoms I get so many results from the internet that are saying ‘fibromyalgia’.

As I’m a girl with autism I have like always tensions of all the stress I have all day in like every situation (working, going grocery shopping, taking a buss, going to the city). All that tension could make things worse.

The last thing I want is a long time spending in the hospital for doing some more test or spending days there to found out what’s wrong. Not knowing what will happen with me that day, always freaks me out.

So now I don’t know what to do. I really love my job and I just don’t want to give it up or stay at home because of all the pain. I only have 3 months left there at my work place and I want to spend those months at work and not in a hospital.

Christmas and Holidays?

This year I don’t have plans for Christmas eve, or the year ending. Besides that I have to work December 30 and 31. Guess I will be in bed on December 31 at 9pm like always 😦
While all my facebook is having a party I’ll be at home, in bed watching a movie or just sleeping.

On Christmas day I a family diner in the afternoon. But if I have so much pain and if I’m so fatigue like today. I guess I’ll be just in my room and watching a movie on Netflix. I don’t have the best family for parties. The make always so much noise and they always give me so much headache.

For you?

So I hope you all have amizing holidays this year and great parties !

One day …

One day, I hope that I can life a happy life without this much pain. That I found a really good doctor that give me some advice on how to life with this pain.

Love, Lucy xx

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BLOGMAS 4 … here’s the cold, here’s the pain

It’s December! Time to drink a nice hot chocolate, go for a walk in the snow, etc. Every year I really love the winter season because it’s so cosy and lovely (I just love watching the snow fall down). It’s so relaxing for me.

It’s kind of watching a lava lamp and watch the color fall down. As an autistic girl it’s so good to clear my head.

This year

This year it’s so different. This winter loving girl is now wishing I was in Florida and could be in the sun all day.

Since a few months now I have some serious pain like everywhere in my body (neck, shoulder, arms, legs, feet, …). Just everything hurts, when I sit down, walk around, sleep.

Last week I went to my doctor and he took some blood to check if I had rheumatism. All test of the blood were negative, so regarding him everything was okay. He just send me home with some iron pills I have to take for 2 months.

I know it’s just a few days since I took the first pills, I feel more pain everyday. So horrible.

When I’m at work as a shoeseller I have to take 3 extra pills to get me through the day, and not make me cry because I have so much muscle strain.

I also feel like I’m having one migraine after the other. It’s so crazy.

Okay, I know it’s wrong to play for doctor by using Google. A few family members have some mucles problems and a few years ago before I was diagnosed with autism they thought I was having fybromyalgia too. 

Fybromyalgia or not?

The next few weeks I’m going to wait how it all will end with the iron pills but I don’t expect a mirable from them.

symptoms

Afbeeldingsresultaat voor fibromyalgia symptoms

A few of the symptoms above I have, but mostly it’s because of my autism. At least that’s what I always think.  Others I just can say I have them since a couple of months (Yeah I know a long time but doctors are not my best friends).

One by one I just can say ‘YESSSSS, I have that’. So I end up with saying ‘yes’ to every single of the 25 mentioned above.

So why I’m I still sitting here and writing a blog with a lot of pain (toke 3 pills for the pain today)?

Everybody is saying ‘see another doctor’ but I don’t trust that much people to touch me and come close to me. I just can’t go to the hospital without preparation and knowing what will happen. So many stress I have from doctors, it’s just not normal anymore.

Guess I will be sitting here for a few months and just bite me through the days, and surviving on pain medication.

Life as a girl with autism is hard, so hard!

And you?

Anyone else that’s reading my blog that have to combination of #rheumatism or #fibromyalgia and have some tips? Tips like what have you done before the diagnose or what do you have to go through in the hospital to get the diagnose?

Thanks for reading ! Love Lucy xx