Diary of a HBO user
(continued)

I am feeling positive, but I don’t want to get my hopes up. I am always let down. But at least this can’t do me any harm. No chemicals, no needles, just oxygen. No Doctors !

I cannot wait. I feel so excited.

I decided to keep a type of diary of how I get on, including a list of the problems I now face. It will be interesting to see if any of them subside...

Legs, Hips and Lower Back/ Stomach/ Hand & Arm:

• Pins and needles
• Numbness
• Dead and Heavy Feeling
• Freezing
• Burning
• Muscle Spasms
• Shakes – tremor
• Weak and jelly like
• Sensitive to draught, movement e.g. in a car on a train
• Occasionally touch

Colour change: skin tone, purple, blue and off white

Various different types of pain:

• Shooting
• stabbing
• burning
• aching
• twisting

Joints

HIP Joint area: very painful, noticeable changes – dips in

Joints :Stiff, as if they have seized up, not very moveable. i.e. bend

My right hip, has now changed shape (instead of curving out, it curves inwards and is very noticeable)

Ability and Mobility:
I have days where I have severe problems walking around the house.

At night my legs go so dead I have problems moving them. I have to hit them “to bring life back” and lift them with my hands.

The reason why:

Legs either:

• Go dead and cannot move very well
• Feet drag
• Go all weak and cannot support myself
• Pain all over
• Can manage 10-15 paces on a good day, bad day this can be 3-5
• Legs feel as if they are clamping together.

Have pins and needles feeling in hips, bladder area. Daytime not so bad, night-time worst. I cannot decide if I need to go to the toilet or not.

Head

After being on my feet (stood/walking) for more than 30 mins:

• Heavy feet
• Dry Mouth – lips stick to teeth
• Hearing: noise is muffled
• Vision: Colour goes grey
• light headedness and dizzy

Weak all over - Feels as if I am swaying - Heart feels as if it beating faster - Feels as if I am going to slip away on to the floor.

Normal Bad head Day:

Dizziness & Light head

Feel things are getting worse. Medication does not seem to be working. Have even tried some Medication (Lidoderm – Lidocaine patch 5%) which I got from the USA.

I have been known to take up to 30 tablets a day just to survive.