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My Journey with CFS

Nutrition. Love. Healing.

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I thought it might be a good idea to show people what an average day is like in my world at the moment.
 I worry people see me out and think I'm like that all the time, they don't realize that might be the one and only time I journeyed outside the house that week. It's becoming very obvious people don't understand what goes on behind closed doors. I would also hate for friends to think I'm being ignorant by not attending things etc when in their mind they think I'm living a normal life.


A Day In The Life of a CFS Sufferer...




9-10am - Wake up. Lay there for a while just slowly waking up & having some quiet time (it takes me a long time to get going in the morning for my body to summoned some energy to walk to the bathroom)


10am - Mum will make me breakfast an omelette & spinach probably


11am - On a good day, have a shower, get dressed into my uniform (my CFS uniform of trackies & tshirt or PJ's)


12pm - Watch TV, read for a while, generally rest from getting dressed


1pm - My mum will make me lunch. Salmon & salad.


1:30pm Rest


4pm - Make a cup of green tea. Rest.


7pm - Mum will make us tea. Chicken/fish with vegetables. Rest.


9pm - Make a cup of nettle tea & go upstairs to get ready for bed. Mum does my physio on my back.


10pm - Bedtime.


Wow what a fun day. Yet people think it odd when I get annoyed when they complain about being bored. If their bored they can go for a run, jump in the car & go out. I'm stuck. I actually never get bored, hard to believe? I think I'm just used to it now.
This can differ anywhere from being a worse or a better day. Above is a very average view.

I probably make it out the house once, maybe twice a week at best. Then it's in my scooter or wheelchair & perhaps only to Tesco with mum or the library to choose a book/DVD. But I never go anywhere alone.

I was so pleased I made it out on my birthday for a full day out. That was Monday, its now the following Sunday & I'm still pretty much bedbound. I've got showered today though so today is a better day.


There is a Chronic Fatigue 'scale'. If a 'normal' person was 100%, working 5 days a week, enjoying the weekend, having a general full busy life. I'm about a 25% somewhere between these two...



SEVERELY AFFECTED
30%Moderate to severe symptoms at rest. Severe symptoms following any physical or mental activity. Usually confined to the house but may occasionally take a quiet wheelchair ride or very short, gentle walk in the fresh air. Most of the day resting. Very small tasks possible but mental concentration poor and home study difficult. Children may be too ill to access any education at all. This should be respected and kept under review.
20%Fairly severe symptoms at rest. Weakness in hands, arms or legs may be restricting movement. Unable to leave the house except very rarely. Confined to bed/settee most of the day but able to sit in a chair for a few, short periods. Unable to concentrate for more than one hour a day but can read for about 5-10 minutes at a time.

Link -  Functional Ability Scale . 
A couple of weeks ago I had a week up in the Lake District with my parents, it's always great to have some fresh air and to see a different four walls.
On Monday it was my birthday, I had a lovely day. We went to Monkey Forest & Trentham Gardens, me in my scooter but I prefer it alot more to my wheelchair. I'm in control of it and can choose to go where I like.

However, I never normally do so much and I pushed myself abit too much, second day confined to bed with mum having to do everything for me, help me dress & hold my glass to drink. I hate these really bad days, but tomorrow will be better hopefully.


My puppy fits!! Perfect 


Fudge & I next to Windermere


Me outside Monkey Forest




The bare foot walk at Trentham Gardens



Callum & I



 Bit of bad timing on this picture from all of us!



What a smiley face :) my doggies always cheer me up xxx





I haven't blogged in a while due to one reason. I am so confused with resent goings on with my health I still don't really know what to say.


How do I describe my emotions?
Confused
Despair
Upset
Sheer frustration
Worried
Helpless
Stressed
Lost


I feel the past few months have been consumed with the one big question...
"Do I have Chronic Fatigue Syndrome or Lymes Disease?"
(or both because long-term Lymes can cause CFS)

It's a huge mind-field and I don't know where to start to explain it all.

Firstly, I could have Lymes Disease because I was bitten by a tick when I was 8 and ever since I haven't been 'normal' and grown worse and worse. Coincidence?

Both illnesses present with the same symptoms that's why I have never been bothered about which I have because it doesn't really matter to me. However, since the recent relapse in January I feel at the age of 22 I need to know. With the added reason, I have researched Lymes Disease more and if left untreated can grow worse & worse over time. Problem is, ask any specialist and they will tell you it's very hard to get a correct diagnosis because it is so rare and complex of an illness.

I had blood tests done in Germany (because this clinic are supposed to be the best in Europe for Lymes) and received an email which made us believe I didn't have Lymes but apparently we were mistaken. So after one week of feeling like finally we know, lets look at the positives and move on... 
We then got another email from the specialist who thinks I have signs of Lymes but still will not give a conclusive yes/no answer. So now we're back to not having a clue what's going on.

My parents have been to two Lymes Disease conferences in Dublin & Carlisle to find answers, treatment and to gain a wider knowledge about the illness.

Problem is, I can go ahead and start the treatment for Lymes Disease and if I see a big difference in my health that will tick another box that I have it because I am responding to treatment. However, this is difficult to do with my current stomach issues because we are not sure the treatment will even be absorbed.
I want to bury my head in the ground like an ostrich at the moment I'm so frustrated.

Am I being unreasonable wanting a doctor to say "Here is what is wrong with you, do this and you'll be better".

I just want answers so I can get the correct treatment and try to rebuild my life again.
Confused? Yeah, me too.





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About Me

About Me

About Me

Hi my name is Becky. I have a great love for health & nutrition, currently finishing my Nutrition diploma with CNM & cuddling lots of Cockapoos.

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My Journey with CFS

Nutrition. Love. Healing.

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