Hi,
I feel a bit of a fraud as I’m not a carer and not sure if my situation is appropriate here, but I am affected by my husband’s condition of Chronic fatigue. He was diagnosed about 15 years ago and had to take early retirement because of it. He does not have the typical symptoms, like being confined to bed for long periods, or being unable to do things on a daily basis, but he IS affected by how much he can do, and what type of thing he does. Consequently our lives are dictated on a daily basis by what he can manage. To the outside he appears normal and capable. No one would know he had it. At home however, he often has ‘lows’ which appear most late afternoon. He has to stop, often has a cold sweat, can’t think straight, has brain fog, until it may improve around 7. Other days he may wake up feeling bad, with headache and shoulder ache, and it can last all day. He can no longer do activities which require concentration without suffering consequences. He was recently ill for two days after trying to reorganise some screws because of the concentration required. He will often feel dizzy and is terribly forgetful. My issue is finding an outlet for my frustration, anger and loneliness, so that it is not directed at him. Most things are dictated by how he feels, so I can’t make plans with any confidence that he’ll be able to participate. For my birthday recently we went to two tourist attractions but I ended up going round on my own both times while he found a seat and went on his phone. Unusually, he is able to do physical activity and does tennis, walking football and hikes with some male friends. A walk down the road in the evenings with me is frequently curtailed with him claiming he doesn’t feel well and that he can’t help it. I know what this sounds like! But this is the reality of my life. He can’t drive or be driven for long periods as that makes him unwell for the next couple of days. Sorry, I know this a rant but I just wondered if anyone else is in a similar situation, not a carer, but affected by a long term condition suffered by their partners. Thank you for reading.
I feel a bit of a fraud as I’m not a carer and not sure if my situation is appropriate here, but I am affected by my husband’s condition of Chronic fatigue. He was diagnosed about 15 years ago and had to take early retirement because of it. He does not have the typical symptoms, like being confined to bed for long periods, or being unable to do things on a daily basis, but he IS affected by how much he can do, and what type of thing he does. Consequently our lives are dictated on a daily basis by what he can manage. To the outside he appears normal and capable. No one would know he had it. At home however, he often has ‘lows’ which appear most late afternoon. He has to stop, often has a cold sweat, can’t think straight, has brain fog, until it may improve around 7. Other days he may wake up feeling bad, with headache and shoulder ache, and it can last all day. He can no longer do activities which require concentration without suffering consequences. He was recently ill for two days after trying to reorganise some screws because of the concentration required. He will often feel dizzy and is terribly forgetful. My issue is finding an outlet for my frustration, anger and loneliness, so that it is not directed at him. Most things are dictated by how he feels, so I can’t make plans with any confidence that he’ll be able to participate. For my birthday recently we went to two tourist attractions but I ended up going round on my own both times while he found a seat and went on his phone. Unusually, he is able to do physical activity and does tennis, walking football and hikes with some male friends. A walk down the road in the evenings with me is frequently curtailed with him claiming he doesn’t feel well and that he can’t help it. I know what this sounds like! But this is the reality of my life. He can’t drive or be driven for long periods as that makes him unwell for the next couple of days. Sorry, I know this a rant but I just wondered if anyone else is in a similar situation, not a carer, but affected by a long term condition suffered by their partners. Thank you for reading.