Tiredness and Ability to Work
Tiredness
There is no doubt that fatigue plays a major part of the majority of people's lives when they have either GBS or CIDP.
What is worrying to me and has been a definite trend throughout the later parts of this survey, is that the results for GBS seem much higher than they are perceived to be by the medical profession or as the result of an acute disease. Why are so many people with GBS still suffering to this level?
It is clear there is a difference and as a person with CIDP, I can agree that I am exhausted at the end of each and every day - and really don't know where the energy has gone - when comparing myself to before the illness
There is no doubt that fatigue plays a major part of the majority of people's lives when they have either GBS or CIDP.
What is worrying to me and has been a definite trend throughout the later parts of this survey, is that the results for GBS seem much higher than they are perceived to be by the medical profession or as the result of an acute disease. Why are so many people with GBS still suffering to this level?
It is clear there is a difference and as a person with CIDP, I can agree that I am exhausted at the end of each and every day - and really don't know where the energy has gone - when comparing myself to before the illness
Ability to Work
Now this really did not make sense (as stated above). If GBS is an acute condition and 80% of people with it make a good recovery, then I would expect 80% of those to be back at work (so I expected a 20% - No, 20% - Limited and 60% - Fully), whereas for GBS we have a 40/20/40 split - more or less. So, whilst I am happy with the CIDP figures, the GBS ones seem to be far too high, is it because:
I do not know the answer. From my position, with CIDP, I have returned to work fully (with modifications to my car and job), but I suffer massively from fatigue and can (and have) over do it and cause issues, but as I need to earn money, I have little choice.
Now this really did not make sense (as stated above). If GBS is an acute condition and 80% of people with it make a good recovery, then I would expect 80% of those to be back at work (so I expected a 20% - No, 20% - Limited and 60% - Fully), whereas for GBS we have a 40/20/40 split - more or less. So, whilst I am happy with the CIDP figures, the GBS ones seem to be far too high, is it because:
- I asked the question in the wrong way? "Are you able to return to work? (Yes - Fully, Yes - Limited or No)"
- Are people being mis-diagnosed with GBS when they have CIDP (because GBS is more known about?)
- Does it relate to previous slides about fatigue and this causes them not to be able to return to work
- Are the previous thoughts on this for GBS wrong
- Should other factors be considered:
- like people are older and recover less fast
- were much fitter before so will struggle afterwards
- generally in the before and after they can do less
- Is GBS not an acute condition!
I do not know the answer. From my position, with CIDP, I have returned to work fully (with modifications to my car and job), but I suffer massively from fatigue and can (and have) over do it and cause issues, but as I need to earn money, I have little choice.