Do you ever crash out of the blue?

[Jemima37]

Hair will get used to not being washed as often. My limit is about 6 days, then the oil in it starts smelling a bit rancid. I try to shower every 5 days. But I still stay very clean and generally unsmelly, since I can't do anything too sweat-inducing anyhow.

It might help to talk to a therapist who understands chronic illness, to help you adapt and deal with your cleaning urges. ME and excessive cleaning are simply not compatible.

Thank you so much.

I will try to do that and definitely looking for a therapist is a good idea.

Julie

 

[Valentijn]

I feel guilty if he cooks at the weekend or id the kids have 2 take away in the week. I used to cook every night even last year but the last few months I just can't.

I can usually cook dinner if I use a slow cooker. Then I start around 3-4pm, and do about 5 minutes of prep work every hour. By 7pm, it's ready to eat. And if you go easy on yourself in the morning, you probably won't be so exhausted in the evening.

My friend said she had sever ME but still made herself shower every day so part of me has felt I should too because maybe that is very important to still do that.

No offense to you or your friend, but if she was able to shower every day, I really think she doesn't have any idea what severe ME is At any rate, we can't compare ourselves to others, especially in trying to attain what they do. The disease sets the limits, and we have to adapt to them.

 

[Mrs Sowester]

I really do feel for you, I know exactly you're feeling right now.

1st thing, people with severe ME can't shower every day. Being severe means being unable to attend to your personal care by yourself. Someone with severe ME would need someone to take them to the shower and wash them. It sounds like your friend is misinformed.
I try to bath every 2.5 days. I have sebhorric dermatitis (which I can't spell) my face and hair are incredibly oily so I look awful on day 2, these days I scrape it up into a messy bun. I did have it cut short in year two of ME because it was such a struggle, but I soon realised that it takes more effort to style short hair than long, so I've let it grow again and I never bother styling it or even drying it. I just comb out the knots and let it dry naturally. I use combs or clips to make it presentable if I'm going out.
Funnily enough the best thing I did for my self esteem after getting ME was to get rid of many of the mirrors I had about the home. It's a very liberating thing to do.

Can I reassure you if you rest and ignore the housework you will have reserves of energy left to do the quality time things with your kids like going to their school events and on holidays. These are the things they will remember - they will not thank you for a clean house - they will thank you for prioritising the things that matter to them.

The kids are old enough to make their own breakfast and take a turn a week at cooking dinner - you are being a good mum by teaching them self reliance and domestic science!
At the weekends get the kids to help you cook a huge pot of something you can freeze portions of, like chilli, spag bol or curry (You can sit at a table to chop vegetables btw - 6 years it took me to realise this!)

Sit down to fold washing, make piles next to you and get the kids to put their own things away, make and change their own beds. They are old enough and perfectly capable. If their rooms are a mess, shut the doors!
I insist on tidiness in communal rooms and get my husband to help clean once a week, I do surfaces he does the floor. He changes the bed, I change the pillow covers. It's quite nice doing these things together actually, it brings us closer.

You can sleep during the day, you can sleep from when the kids go to school until they get back if you want, you need rest. You can sit on the sofa and watch tv all day. You are ill, you are allowed to sleep and rest.

I stopped driving 6 months in, I just wasn't safe. People weren't happy about it, but they weren't the ones having all the near misses. If you don't feel confident driving you don't have to do it, you're an autonomous adult - do what feels right for you.

If you can't get out for family days out try a wheelchair, I know it's a hurdle, but if it means you can go out with them, then it's worth it.

Basically, you can't fight ME, it will win every time. So let go of the things that don't matter save your energy for the things that are truly important.

 

[Jemima37]

I really do feel for you, I know exactly you're feeling right now.

1st thing, people with severe ME can't shower every day. Being severe means being unable to attend to your personal care by yourself. Someone with severe ME would need someone to take them to the shower and wash them. It sounds like your friend is misinformed.
I try to bath every 2.5 days. I have sebhorric dermatitis (which I can't spell) my face and hair are incredibly oily so I look awful on day 2, these days I scrape it up into a messy bun. I did have it cut short in year two of ME because it was such a struggle, but I soon realised that it takes more effort to style short hair than long, so I've let it grow again and I never bother styling it or even drying it. I just comb out the knots and let it dry naturally. I use combs or clips to make it presentable if I'm going out.
Funnily enough the best thing I did for my self esteem after getting ME was to get rid of many of the mirrors I had about the home. It's a very liberating thing to do.

Can I reassure you if you rest and ignore the housework you will have reserves of energy left to do the quality time things with your kids like going to their school events and on holidays. These are the things they will remember - they will not thank you for a clean house - they will thank you for prioritising the things that matter to them.

The kids are old enough to make their own breakfast and take a turn a week at cooking dinner - you are being a good mum by teaching them self reliance and domestic science!
At the weekends get the kids to help you cook a huge pot of something you can freeze portions of, like chilli, spag bol or curry (You can sit at a table to chop vegetables btw - 6 years it took me to realise this!)

Sit down to fold washing, make piles next to you and get the kids to put their own things away, make and change their own beds. They are old enough and perfectly capable. If their rooms are a mess, shut the doors!
I insist on tidiness in communal rooms and get my husband to help clean once a week, I do surfaces he does the floor. He changes the bed, I change the pillow covers. It's quite nice doing these things together actually, it brings us closer.

You can sleep during the day, you can sleep from when the kids go to school until they get back if you want, you need rest. You can sit on the sofa and watch tv all day. You are ill, you are allowed to sleep and rest.

I stopped driving 6 months in, I just wasn't safe. People weren't happy about it, but they weren't the ones having all the near misses. If you don't feel confident driving you don't have to do it, you're an autonomous adult - do what feels right for you.

If you can't get out for family days out try a wheelchair, I know it's a hurdle, but if it means you can go out with them, then it's worth it.

Basically, you can't fight ME, it will win every time. So let go of the things that don't matter save your energy for the things that are truly important.

Thank you so much.

Great advice I shall take on board. I'm just finding it very hard to accept and worry will I ever feel better.

My daughter's school events are next week and the week after and right now I'm in a constant crash state I know it's too much for me and that's why I'm beating myself up so much. Having the agoraphobia creeping in that also makes things very hard for me. Things have changed alot the last 6 months and I've got worse physically and mentally it's taken it's toll. I even panic about a doctor visiting me at home. I find social things very tough the last 6 months so a huge school event is overwhelming and even more so beinf unwell. I feel the worst mother ever letting her down.

Thank you for your help. I appreciate it.
Julie

 

[Mrs Sowester]

Can you just go to the bit she needs you to see Julie? You don't need to do all the tea drinking, raffle and socialising bits. Ask her which bit is most important. Shower the day before. Sneak in after everyone else, give her a wave, sneak out before the end.
If you just rest properly between now and the event you might just manage it. The doctor may be able to prescribe you something to help with anxiety on the day of the event and a sleeping pill for the night before if you need it.
Get someone to skype the rest of it for you.
Crowds are overwhelming for most pwME, but more due to information overload than social anxiety.

Also, are you really agoraphobic or are you anxious about crashing in public? I don't think it is unreasonable to worry about crashing in public, we don't like to make a scene, do we? (This is why may of us chose to use a wheelchair, it takes longer to crash sitting down!)
Same with the doctor, mine thinks I'm a bundle of angst! I'm not, but this disease is frightening initially and takes some getting used to - we'd be weird if we weren't frightened to be honest!

I'm foggy, so cant go over the thread, but did I read you are coming off mirtazapine because of weight gain? Not sure if that's the best idea, can't you reduce portion sizes instead? And don't snack on anything other than fruit and veg. Only suggesting this because I've found mirtazapine to be helpful with initiating sleep. I take nortriptyline too which helps with my nerve pain and sleep too.

 

[Jemima37]

Can you just go to the bit she needs you to see Julie? You don't need to do all the tea drinking, raffle and socialising bits. Ask her which bit is most important. Shower the day before. Sneak in after everyone else, give her a wave, sneak out before the end.
If you just rest properly between now and the event you might just manage it. The doctor may be able to prescribe you something to help with anxiety on the day of the event and a sleeping pill for the night before if you need it.
Get someone to skype the rest of it for you.
Crowds are overwhelming for most pwME, but more due to information overload than social anxiety.

Also, are you really agoraphobic or are you anxious about crashing in public? I don't think it is unreasonable to worry about crashing in public, we don't like to make a scene, do we? (This is why may of us chose to use a wheelchair, it takes longer to crash sitting down!)
Same with the doctor, mine thinks I'm a bundle of angst! I'm not, but this disease is frightening initially and takes some getting used to - we'd be weird if we weren't frightened to be honest!

I'm foggy, so cant go over the thread, but did I read you are coming off mirtazapine because of weight gain? Not sure if that's the best idea, can't you reduce portion sizes instead? And don't snack on anything other than fruit and veg. Only suggesting this because I've found mirtazapine to be helpful with initiating sleep. I take nortriptyline too which helps with my nerve pain and sleep too.

I had agoraphobia in the true form in 2013 after my brother attacked me. I had therapy and overcame it about 80% then sinxe the ill health began last year it a slowly crept back and with beinf so isolated at home it's led to social anxiety and fear of being in large crowds around people. So it's more sever social anxiety i'd say and the agoraphobia isn't true agoraphobia I had before it's more I feel too unwell to go out and having being at home so long I've become extremely anxious around people. I struggle to open the door to the postman i have panic attacks now around anyone but my own family. It really has come since being stuck at home isolated this last 6 months because my health worsened.

So a huge social event in a huge hall with lots of people would be extremely hard for me. Recently I feel so unwell every day id not feel well enough to go in sure. Every day I feel weak and exhausted even when out of a crash no matter if I rest all day and I do sleep at night. Is that not normal to feek so unwell eveey day with cfs?

Yes I'm weaning off Mirtazapine slowly doing it over 15 months. It's not helping my health or mental health so gp agrees I should wean off. Im taking it with no benefit anymore. It causes weight gain regardless of portion size. I eat extremely healthy and still I gained all that weight lol. I don't snack on anything but fruit really.

 

[Mrs Sowester]

Fair enough. Could you have someone Skype the events then you'd be there in spirit? Your daughter's teacher could arrange it for you. Can your husband to go to some of these events?

Yes, it's normal to feel awful everyday with ME if you're doing too much and not resting and sleeping enough. That's why I was asking about Mirtazapine, because it's helped my sleep quality tremendously.
I had a lovely OT who told me I had to listen to my body, if it was giving me warnings I must stop. She made me rest completely and only do 5mins activity an hour (as @Valentijn says up thread) and build up exceptionally slowly, always stopping when my body gave me warnings.

 

[Jemima37]

Fair enough. Could you have someone Skype the events then you'd be there in spirit? Your daughter's teacher could arrange it for you. Can your husband to go to some of these events?

Yes, it's normal to feel awful everyday with ME if you're doing too much and not resting and sleeping enough. That's why I was asking about Mirtazapine, because it's helped my sleep quality tremendously.
I had a lovely OT who told me I had to listen to my body, if it was giving me warnings I must stop. She made me rest completely and only do 5mins activity an hour (as @Valentijn says up thread) and build up exceptionally slowly, always stopping when my body gave me warnings.

My husband goes to every single event I can't attend this last 6 months. He definitely will be there. Id never let her be without one of us there. He has said he would video it for me or video call.

I shall try that small activity every hour. I do way too much or I rest for hours and don't move at all when the children are in school as I've done 2 hours activity in the morning it wipes me out. By the time they've left for school I feel so ill.

 

[bombsh3ll]

I really feel for you, and reading about your experiences your symptoms sound so much like mine. I constantly feel like I am going to faint although I never do and my cortisol levels were also high. I am a GP and still managing to work 2 days a week although in a restricted role and I may not be able to do it for much longer. I think some GP's are reluctant to diagnose ME as it has no single positive marker to confirm diagnosis, unlike other illnesses like diabetes or cancer etc, and there is the fear that a) the patient has something else treatable that has been missed and b) the stigma and abuse that can then follow patients once this diagnosis is in your records, unfortunately.

With regard to the blood tests you mentioned, those white cell anomalies absolutely do not fit the profile of a haematological malignancy like leukaemia or lymphoma. When we occasionally find this the abnormalities are dramatic and they are not just monitored in another few weeks. I hope this can reassure you a little.

I totally agree with the advice about pacing - my floors are lucky if they are cleaned once a month, and I take a bath only on or the day before the 2 days I work. I wear a cap to hide my greasy hair but I don't go out much anyway aside from work. Some things just have to go!

Look after yourself.

 

[Jemima37]

I really feel for you, and reading about your experiences your symptoms sound so much like mine. I constantly feel like I am going to faint although I never do and my cortisol levels were also high. I am a GP and still managing to work 2 days a week although in a restricted role and I may not be able to do it for much longer. I think some GP's are reluctant to diagnose ME as it has no single positive marker to confirm diagnosis, unlike other illnesses like diabetes or cancer etc, and there is the fear that a) the patient has something else treatable that has been missed and b) the stigma and abuse that can then follow patients once this diagnosis is in your records, unfortunately.

With regard to the blood tests you mentioned, those white cell anomalies absolutely do not fit the profile of a haematological malignancy like leukaemia or lymphoma. When we occasionally find this the abnormalities are dramatic and they are not just monitored in another few weeks. I hope this can reassure you a little.

I totally agree with the advice about pacing - my floors are lucky if they are cleaned once a month, and I take a bath only on or the day before the 2 days I work. I wear a cap to hide my greasy hair but I don't go out much anyway aside from work. Some things just have to go!

Look after yourself.

Hello

Thank you for your lovely reply. I am sorry to hear you're struggling too. I take my hat odd to you still working. You're doing well to do that but I imagine it's very hard for you.

Wow you've reassured me so much I can't thank you enough. I just cried reading your reply about my tests. Would you mind if I private messages you to ask you a question? Feel free to say no, I don't want to put on you at all.

Thank you again
Julie

 

[bombsh3ll]

Hello

Thank you for your lovely reply. I am sorry to hear you're struggling too. I take my hat odd to you still working. You're doing well to do that but I imagine it's very hard for you.

Wow you've reassured me so much I can't thank you enough. I just cried reading your reply about my tests. Would you mind if I private messages you to ask you a question? Feel free to say no, I don't want to put on you at all.

Thank you again
Julie

Of course you can message me to ask a question. Becoming ill myself 3 years ago has been such a humbling & mind-opening experience and something that I wish I could have drawn from to become a better doctor. Instead it is limiting my ability to do the job I spent years training to do, so if I can help anyone even in a small way online then I would be very glad to.

 

[Jemima37]

Of course you can message me to ask a question. Becoming ill myself 3 years ago has been such a humbling & mind-opening experience and something that I wish I could have drawn from to become a better doctor. Instead it is limiting my ability to do the job I spent years training to do, so if I can help anyone even in a small way online then I would be very glad to.

Thank you so much thats very kind of you.