Monday, 30 August 2010

The Chiarian’s Creed

I promise to accept the fact that I have Chiari
Malformation, a neurological disorder which will
limit my abilities in my everyday life.

While I will always have Chiari, some days will be
good and some days will be bad. I will be thankful
for the good days and try to make the most of them.
When I am having a bad day, I will try to remember
that most likely it will not last.

When I am having a bad day, I will listen to my body,
and get the rest that I need. I will let my family
know that I am not feeling well, because they cannot
read my mind.

I will not feel guilty about resting, because I will
eventually begin to feel better, and in the long run,
it will also benefit my family. They will not become
malnourished if they eat peanut butter
sandwiches for dinner.

I will not feel guilty or worry about the work that
is not getting done while I am resting. The world
will not all apart without me, even though it looks
like it already has.

I will not let anyone else make me feel guilty for
taking time out for myself. They will never understand
exactly what I am experiencing, the pain that I feel,
the exhaustion that I feel. They will never understand
the fear that I feel when my symptoms creep up on me,
and land me flat on my back.

I promise not to feel sorry for myself when I am
feeling bad, because there are a lot of people out
there who are in worse shape than I am. I will not be
sorry for what I don’t have, but be thankful for what
I do have.

I promise to learn a lesson from my illness, which is
not to take life for granted. I will enjoy every moment
that was given to me, and be thankful for the times
that I can smile and laugh.

I will try to help others who also suffer from my
condition. There are many confused and frightened people
who need to hear comforting words from someone who has
been there. There are many people who need me to take
his or her hand and be pointed in the right direction.

Lastly, I will not ask, “Why me?” While Chiari has
weakened my physical body, it has strengthened my heart,
my soul, and my spirit.

Thursday, 26 August 2010

I promise I will try and update this more!

So its currently 2 am on 27th August. I have just received a very drunk phone call for my best friend, who is a little drunk asking me to come and rescue her. The only problem with that being that I am in Hythe and she is in Belfast lol.

So update on my Chiari. I have switch GP surgery's, on the advice of Claire's mum. She is now my GP and is setting the wheels in motion. She doesn't think I am making it up. She knows so much about my condition. I saw her for the first time about 3 weeks ago. She adjusted my medication, sent me for a blood test and wrote to my neurosurgeon asking for an earlier appointment. Had my blood test done 4 days after on a Friday morning and by the Monday morning I had a phone call informing me of the results. At my old surgery it was common to wait about 4 weeks and only get the results if you bugged them. The results showed I had slightly low potassium, so I just have to eat more bananas. I have also started to take a vitamin supplement, just to cover myself.
Went for another appointment on Tuesday, as we had not heard from neuro she sent them a fax again asking for a quicker appointment so fingers crossed!
However, the better news is that she has agreed I can go back to work on an adjustment plan. I basically can only work part time, can't be left alone with children in case I faint, no lifting, climbing or strenuous activity. I go into work during the week of the 6th September to get this sorted, I hope they can accommodate me.

I also had an appointment with the eye specialist. My eye sight has changed again (in a month) and so has my squint. I have been given a temporary lense in my glasses and this has got rid of my double vision totally !!!

Today I have had the worst day in a long time. I have had a really bad headache, I still can't shift it so I am still wide awake at 2.45. Yippeeeee!

I will update this after my next hospital appointments which are in the next few weeks.

Saturday, 14 August 2010

My Life in Pain

Pink flawless skin, so soft and tender,
Sweet baby girl, full of hope and wonder.
Tiny little cries with new breath of life,
No one foretold future years of such strife.

Very stubborn, strong-willed, and always full sail.
Living life to its fullest, blazing her own trail.
Educated by experience, a stranger to fear;
Walking on faith blind to demons near.

Savor the highs, she's always vowed;
Enjoying the journey of living out loud.
Sampling the world, an adventure to roam;
With God's gift of grace, her heart found a home.

Blessed in love, her best self she'd found;
Charming those near, laughter her favorite sound.
With drive, dreams, and wit, seeming to have it all.
Now hearing the whispers, her health soon will fall.

Her brain slipping downward, her MRI notes;
She's buried in pain and a sea of white coats.
Giving up her goals, her body now weak;
Rare condition they say, new specialists she'll seek.

More scans and tests, questions abound.
Surgery the only hope, no cure to be found.
Her balance so unsteady, her head in a spin;
Aches and pains all over, her energy now thin.

Her health is unfaithful, her body betrays;
A beauty now broken in so many ways.
Grand dreams now futile, her efforts in vain;
A new evil now lingers bringing more pain.

Unable to think clearly, illness her new friend;
Her body the new battlefield, the medications defend.
Time is her warden in this prison full of ache;
She'll live long in her torture, her life it will not take.

Once her drive was so strong, but now it's dwindled low;
Her star then blazing brightly, is now a dimming glow.
A life so full of joy, and with passion for the quest;
She's unable to move forward, for now it's time to rest.

The playground of her world, once welcoming and warm;
Now stealing with shadows, thriving in her harm.
The warriors of disease will battle all life long;
Breaking er defenses, the beasts seem so strong.

Sunday, 1 August 2010

Things you may not know!

30 Things About My Invisible Illness You May Not Know 1. The illness I live with is:
- Chiari Malformation Type I (CM or ACM). In a nutshell, the back/bottom of my brain descends into my spinal canal.

2. I was diagnosed with it in the year:
- 2010

3. But I had symptoms since:
- Forever, without realising it till now. I can't remember a time when turning round didn't make me feel sick. However my symptoms started properly on the 25th March 2010

4. The biggest adjustment I’ve had to make is:
- Learning that I have limitations and I can't always do what I would like, I have to try and predict how things will affect my symptoms and give myself time to recover from them. I get tired out just walking for a few hours. So if I plan a day out, I also have to plan the next day as a rest day.

5. Most people assume:
- That I am drunk. When I am tired I stumble over nothing and can't walk very well.

6. The hardest part about mornings are:
- Everything. I don't sleep well so mornings kill me. My headache tends to be bad in the morning.

7. My favorite medical TV show is:
- Casualty, Holby city and scrubs!

8. A gadget I couldn’t live without is:
- My phone and computer. How else would I keep in touch with people whilst stuck in my bed!

9. The hardest part about nights are:
- Being awake for the whole night, and realsing its light just as my eyes start to feel heavy.

10. Each day I take:
- 60mg Amitriptyline. Between 50mg and 150mg of Diclofenic. 800mg Gabapentin. 150mg of Sumatriptan (doesn't help) 5mg Folic acid. Occasionally I will take other painkillers, no idea of the names.

11. Regarding alternative treatments I:
- have yet to try anything.

12. If I had to choose between an invisible illness or visible I would choose:
- niether, but I guess I am happy with mine. On good days I can go out and no one bats an eyelid.

13. Regarding working and career:
- I am off long-term sick. Hoping to go back as and when is possible. Doing my degree with the Open University.

14. People would be surprised to know:
- How much of my condition I hide. I don't want people to know how sore I am all day long.

15. The hardest thing to accept about my new reality has been:
- Seeing people get on with things and me being stuck behind. Having to live with my mum still and generally putting my life on hold.

16. Something I never thought I could do with my illness that I did was:
- Smile, but I can and I do!

17. The commercials about my illness:
- Nothing. Not even my GP had a clue what it was. When I told him, he thought I was making it up and accused me of wasting his time. Thanks!

18. Something I really miss doing since I was diagnosed is:
- just going with the flow. Getting drunk, hanging out and belive it or not working!

19. It was really hard to have to give up:
- Work.

20. A new hobby I have taken up since my diagnosis is:
- Blogging =D

21. If I could have one day of feeling normal again I would:
- Go on a roller-coaster, skydive, bungee jump and get drunk!

22. My illness has taught me:
- who matters in life. My friends Family and boyfriend.

23. Want to know a secret? One thing people say that gets under my skin is:
- "Don't you just have a migraine?"

24. But I love it when people:
- love me for who I have become, rather than remembering who I was!

25. My favourite motto, scripture, quote that gets me through tough times is:
- For everything a reason!

26. When someone is diagnosed I’d like to tell them:
- to read about chiari. And to take it easy!

27. Something that has surprised me about living with an illness is:
- how something so serious can be unheard of. Its not common enough for people to just know about, but not rare enough that it get reported when someone is diagnosed.

28. The nicest thing someone did for me when I wasn’t feeling well was:
- make me smile.

29. I’m involved with Invisible Illness Week because:
- I want other people to know that there is support out there and not to go it alone. Also, people shouldn't judge a book by its cover. Just because I stumble and sway doesn't mean I am a pisshead!

30. The fact that you read this list makes me feel:
- like I am not invisible any more!

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18 at