The Hummingbirds' Foundation for M.E.

The Hummingbirds' Foundation for M.E. (HFME) is fighting for the recognition of M.E.,
and for patients to be accorded the same basic human rights as those with similar
disabling and potentially fatal neurological diseases such as M.S.

Tips for M.E. patients that are parents

Tips for M.E. patients that are parents

Click on the links to download a copy of the all-in-one Tips document in a printer-friendly Word format, PDF format or as a large-print PDF

Tips for M.E. patients that are parents

COPYRIGHT © TATIANA CORONADO-BRICENO AND CAROLINE GILLIFORD, NOVEMBER 2010. UPDATED SEPTEMBER 2011. FROM WWW.HFME.ORG

 

M.E. patients have strict limits on how active they can be physically and cognitively and also how much orthostatic stress and sensory input they can tolerate. If these limits are breached, symptoms worsen immediately and there is also a further deterioration 24 – 48 hours later, as well as the very real potential for repeated or severe overexertion to prevent significant recovery, cause disease progression or even death.

 

M.E. is an overwhelming disease to have to cope with. M.E. patients that have small children to care for also face many additional challenges. Life does not get more difficult than having severe M.E. and small children!

 

By working with the M.E. patient to try to manage and minimise some of these problems the sensitive carer can have an enormously positive influence on the life of the patient, and the patient’s children. As much as is possible the needs of the patient for rest and avoiding overexertion must be sensitively balanced with the needs of the children.

 

As M.E. severely affected M.E. patient and mother Tatiana explains,

Sometimes the best care for a M.E. patient is good care for his/her kids, as any parent by nature thinks of his/her kids before himself/herself. And if the kids are not well looked after where is not much chance for heath improvement of the patient no matter how much care the M.E. patient receives. Worries for the little ones will work as a serious stress factor which is one of the worst heath hazards in M.E. as M.E. affects the ability to cope with stress and all strong emotions (and any type of cognitive or physical stress).

 

Carers can assist M.E. patients that have children in the following ways:

 

  • Do not allow the children to play right next to the patient’s door, as the noise will cause pain and possibly relapse.
  • Make sure the TV set is positioned as far as possible from the patient’s room, and always watched at a reasonable volume (and not too loudly).
  • Children that can be given enough walks/exercises out of the home will be calmer and quieter at home. When the children are at a park/playground this allows the M.E. patient to have some quiet time off.
  • Having the children well looked-after (fed, bathed, well dressed ext.) means that the patient doesn’t have to worry about basic care tasks but instead spends the little ‘well’ time he/she has for ‘quality fun time.’
  • Help to teach the children about the illness and its consequences. It’s never to early to start and as children tend to forget things quickly they needed to be reminded all the time. This is a hard or even impossible task for the severe M.E. patient to do themselves.
  • Do not allow the children to disturb the patient. It is impossibly hard for the patient to tell the children to leave the room, for a variety of reasons.  If they do enter the room sometimes, it may be best to offer them something interesting to look at or do so they leave the room willingly, instead of telling them off for entering.

 

Tips for M.E. patients that have small children:

 

  • Have a couch or mattress in every room, so that you can always lie down while you interact with your child. You could also drag around an air mattress for this purpose.
  • Always explain as best you can what is wrong with you. Depending on the age of the child, you may like to use some of the HFME leaflets and summarised papers for this purpose.
  • Have toys, books, paper and pencils next to your bed so that you can entertain your sdmall child on the bed with you when you can’t get up.
  • With slightly older children, have safe foods within the child’s reach so he or she can get something to eat if you can’t get out of bed
  • Buy the child or children a CD/mp3 player with headphones so that they can enjoy music, without you having to hear it too.
  • Made sure you have emergency phone numbers clearly listed on or near the phone so that children could call for help if you needed help and were unable to call yourself.
  • Wear earplugs or a noise-cancelling headset when you go out in public anywhere with the child such as a park.
  • Give the child rewards for keeping his or her room clean, from an early age.
  • Teach children to answer the phone.
  • One patient writes, ‘When I was feeling ok I would babysit my friend’s kids so they would have my daughter to give me a break when I really needed it.’
  • Have a chair or a bed next to the window so that you can see your child playing outside even if you can’t be there with him or her.
  • Make sure your house is very ‘child safe’ and has the appropriate locks and gates. One M.E. patient says, ‘Locks on every door of the house allow you to block yourself in the room so you don’t have to chaise your kid all over or don’t need to get up to check on him/her. After the child gets bored with one room you move together to another. That is why the presence of a couch in each room is recommended. It could be an air mattress which you can drag along with you as well.’
  • A child-proof gate may be able to be places in the hallway to block children (and pets) from coming into, or even getting too close to the patient’s room, when the patient is trying to rest.
  • When you have small children and the severe orthostatic problems of M.E., eating while sitting at a small children’s table may be a good idea. It is easier to be ‘closer to the ground’ with OI/NMH/POTS and if pieces of food fall down they are easier to pick up at the end of the meal, before standing.


 

Acknowledgments: Edited by Jodi Bassett.

 

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Click here to purchase the first HFME book!


The book 'Caring For The M.E. Patient' by Jodi Bassett includes a Foreword by international M.E. expert Dr Byron Hyde.

He writes:

"There is so much false information that is picked up and disseminated it is near impossible to hold one’s head above the water and sift through this morass of misinformation. Any attempt to seek the truth is always a major difficulty. Somehow, Jodi Bassett and Hummingbird have managed to plow through this field of weeds."

"This is a book that deserves being read, not only by patients and physicians with an interest in M.E. but the bureaucrats in the USA Centers for Disease Control who have done so much damage to the understanding of M.E. I recommend her book to all and wish it every best success."

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