Husband with CF
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My husband developed Chronic Fatigue 12+ years ago. He was diagnosed with CF, as no other explanation fit his symptoms. He had many tests, but nothing showed up. Thankfully, he doesn't have it so bad that he is confined to bed, or that he cannot do normal tasks. He can even enjoy exercise. In fact, he says exercise makes him feel better. He has what he calls 'lows', which usually occur in the afternoons. He becomes mentally fatigued. Can sometimes break out into a cold sweat. Any stimulus is overload. He sometimes tries to overcome it by eating carbohydrate, but often just has to sit it out until the early evening when it seems to improve. If he does any task which involves concentrating, like wiring a plug or wallpapering, he has to take breaks because it affects his ability to function mentally. He often feels dizzy if he walks down anything which resembles a tunnel. Eg. a tow path lined with vegetation, or a path with high hedges on both sides. He can wake up in the morning and feel ok, but an hour later can experience feelings of being unwell and /or brain fog. Driving long distances, even if he is being driven, seem to require several days to recover. He seems to be worse when it is something he doesn't want to do, but ok when it's something he wants to do, like exercise. Eg tennis, 'walking football' and hiking, all of which he does. I find this very confusing. Is it possible that the extra effort involved in doing something you don't want to do can precipitate CF symptoms?
0 likes, 8 replies
barbara66703 jGloucs
Edited
its sounds like a catch 22. my DH has pernicious anemia and is always tired. He seems to save his energy for the things he likes to do...
jGloucs barbara66703
Posted
That must make it difficult. My DH feels trying to 'save' energy doesn't mean he'll have more later. He never knows when he'll experience feeling unwell, although certain activities will have consequences further down the line. Maybe exercise helps! I don't know. Maybe he really does feel better when he exercises. It puts a lot of strain on the relationship though.
barbara66703 jGloucs
Edited
severe loss of strength energy and brain fog with with other issues are extremely depressing . also this is another reason for exhausting... daily loss of lifestyle and this is unfortunately part of how ill health effects most of us. in a sence we are grieving a loss of what and who we were. i remember the young beautiful man i married and had three beautiful kids.
illness has turned our lives upside down...it has been a fight for several years and many who suffer from different diagnosis the exhaustion and health issues can be overwhelming for the whole family. we have had to give up our planned retirement to travel and do all the things we both worked so hard for all our lives.
i try to do my best to help daily meals cooking cleaning many other preparations for his wellbeing and give him the best quality of life we have left. its also difficult as i am feeling the cost of doing way more than I am capable physically , i am at a loss myself . i don't know how much longer I can do all this with him in a wheel chair cannot dress him self, its a lot. we are looking for help to come in and hoping it will give me time to get my phicalicality find strength and not be in constant pain, totally pooped out down to the bone. some days i don't think i could even walk thru the house... we do what we can and make the best of what we have left in our lives. support each other have no expectations of a fantasy finding supermans cryptonite or a magic potion to just feel better.
I thank the lord for the good days and put our lives in Gods hands and I am grateful to still have my DH no matter the hardships ...
if there were a better way to control this I would be on it in a second...
coping mentally is a learned behavior and i have had excellent advice from a health councelor . that is most important and i believe we need to add our mental health as a risk factor realizing it is part of adjusting and allowing professional councelors to teach us new coping skills as we progress thru illness , life and simply just manage daily life one day at a time.
sorry to go on and on.. i wish the best for you and DH .
jGloucs barbara66703
Edited
Don't apologise for going 'on and on.....'I think venting is part of looking after your own mental health! Your situation sounds immensely more difficult than mine, and I wish you both well in managing the situation. Sounds like getting some help in, for your sake, is a must! Is it possible to share any of the advice you were given by the health counsellor? The unpredictability of what my husband can and cannot do is an emotional roller coaster. Finding ways of knowing how to deal with it would help.
barbara66703 jGloucs
Posted
some days are still up and down. its the mental exhaustion and his instability that has taken a toll on me and why it was necessary to bring a in a mental health specialist.
his decisions are his and i have let go of his unconscionable behaviors/decisions that belong to him not me.its his loss of his comfort zone to be where he is that he cannot cope with ... not mine. even if he thinks he is in control/coping i know i can live with the decisions I make, not his. to separate the truths ....as it cannot effect my decisions and i realize that he has no control over my decisions but only of his 'own' life/death decisions as they all only belong to him and him only.
in other words i have a routine for meals,meds, cleaning , appts. period. ....if he can or cannot corporate then it is not my decision but his...i take daily responsibility for him seriously even if he does not continue to do so. I do not allow the constant disruptions ,negativity , and disallow his behaviors which belong to him... to upset me or the negatives. i own my behaviors in caring for him the best way i can under the circumstances.
i have shingles and i have noticed that severe breakouts were generally parallel to his non conforming behaviors and his bad decisions all have an effect on his serious illness and mine. by allowing myself to let 'it'go. ('It'...being his decisions belong to him )and live in my reality/truths and not his. i had to take my mental and physical life back and put my health first . whats left is positivity and my truths and the rest is left out of the equation. to cope and manage life with less daily pressure by letting the negativity go...even with living in the now life/death issue . he is in control of him I am in control of me period. does that make sense ? its really about taking positive steps and remain true to yourself. nothing can change him . the only change is thru myself which i can control. that is to 'Stay' in your 'truths' and your own 'positivity' its my decision and in my control.
jGloucs barbara66703
Edited
Yes, that does make sense. I think you come to that decision when you realise you can't do it all, and recognise you can't make everything right. I'm trying to step back and protect myself more as much as possible. My husband is still very capable, but the emotional roller coaster is mentally exhausting. If it means I have to take time out, or do things on my own, despite it being lonely, I will have to.
barbara66703 jGloucs
Edited
your last sentence sums it up. and is the first step to taking back who you are and responsibility for yourself in every possible way. Congratulations ..acceptance will change so much in to positive reinforcement and freedom to be .....what you decide.
jGloucs barbara66703
Edited
Thanks. I wish you well with your journey too!