Anyone out there like me?

[Kim-007-mathews]

I care for my bed bound 27 year old daughter who has severe ME and is in pain nearly all the time. She’s on a concoction of pain killers which lessen the pain for short periods of time.

Anyone else out there doing something similar?

[jaykay777]

Kim -- I'm like you only because I've been a caregiver/carer for a family member; once was for my mother, the other three for formerly healthy husbands who later died. In recent years, my 59 year old daughter has twice had major surgery for melanoma but is otherwise healthy and fit. I know what the disease MS is, but am not familiar with ME. Can you tell us about it? I imagine your hopes and dreams for your daughter are on hold at this time. Do you have anyone else sharing your caring duties? I' sure you will hear from others who are caring for adult children. Jaykay.

[Kim-007-mathews in reply to jaykay777]

Thank you Jay kay.

Your words touched me and I wept at the until now unrealised thought of my hopes and dreams for Laura being on hold.

She has been bedbound for nearly 3 years and life is so hard for her, especially as she was a very go-getter sort of person half way through her doctorate when she was diagnosed with ME.

[Cann]

The body usually gives us pain to tell us something and just suppressing it with more toxic drugs may not be the best way.

If I were you I would try complementary therapies, although your daughter would have to agree to it. I would ask locally for experienced, well qualified and recommended people. Was your daughter a positive person before all this pain and does she know what triggered it all?

I am speaking from experience and I know how the body wants to heal, but we need to be connected to it first to know what to do and I was helped by some brilliant complementary practitioners who didn't tell me it was all in my mind or I was depressed like GP's and other doctors told me.

Instead, they knew of tests to have done that revealed a serious fungal infection, a lack of good gut bacteria, a bacterial infection, high levels of Calprotectin and Eosinophyll protein X indicating inflammatory bowel disease, allergies and more - few of which doctors diagnosed or knew how to test to diagnose except with traumatic, toxic and invasive tests that damage a sick body further.

I was 5stone 10lb and near to death, but these brilliant people worked with me including doctors at BHH which was on the national health then, but no longer is, sadly, because the profit is in drugs not homeopathy.

I eat only when hungry, exercise when I need to, rest when I need to, which is usually at night now and not in the day as I once needed to. I weigh a healthy 8 stone and I know I would not be here now if it wasn't for those knowledgeable and professional complementary practitioners who worked with me and showed me the way back to health.

I had all the symptoms of Fibromyalgia, ME, etc. I still have to be careful, but I am so much better than I was when being treated the conventional way.

[Tugun]

Hi,

I had CFS but luckily it never developed into ME. I feel for both of you. I ended up back at work but now I am caring for my mother in end stage Alzheimer's. I also cared for my Dad when he was going through a very difficult and painful time. I know what it is like to hear someone calling out in pain in the middle of the night or day and not be able to help them. Words are inadequate. I really do believe that there are answers to these illnesses - sometimes we may not find that answer but I will keep looking. If it hasn't been done - a good place to start is a hair analysis. This might help to see how her body chemistry is going - her minerals and if they are correctly balanced. It also tells if there are any toxic metals. Both you and your daughter need friends around. Are you getting any outside help for respite or to clean the house etc? This is hopefully available to you. I wish you and your daughter a better and more hopeful 2018.

[Kim-007-mathews in reply to Tugun]

Thank you for your kind words. As you say watching someone in pain is awful!

Having read your message my daughter wants to have her hair analysed . So thank you

[Chrissie533 in reply to Kim-007-mathews]

I don’t have much to say that may help your situation except that I am reading it and send you good wishes.

I am a 57 year old woman who cares for an 82 year old mother who ended up paraplegic following a procedure to remove a gall stone using an endoscope! Paraplegia is devastating. At the same time, I realised that my previously able bodied mother had been masking my father’s dementia. Five years on, mum is virtually bedbound and frailer. Dad’s dementia is very troublesome for all. I am often tired and my role is 50% practical and 50% administrative. Hospital appointments are endless and keeping up with ensuring good practise in care agencies is gruelling. I’ve given up my job as a teacher to care for myself.

I’d like to bet that your daughter worries about you and you may help her by enjoying your own life as much as you can.

Some years ago when I was even more unhappy than I can be now, I was tired all the time. A debilitating tiredness. After much reading I realised I had symptoms of CFS/ME and fibromyalgia.

In the last 4 years I have paid for a personal trainer, lost 3 stone (I was obese) and changed my diet to a high protein, moderate fat, low carb, extremely low sugar diet. I’m more active and pain free and have seen those around me buck up their self care from my role model.

I wish you well

[Kim-007-mathews in reply to Chrissie533]

Thank you Christie, it seems there are so many of us out there that are in caring roles. Bless you for all you’re doing for your parents. Hang in there x

[Tugun]

Hi Again!

I didn't see Cann's reply until after I had posted. Definitely a winner there with some great ideas.

Hope things begin to look up!

[klr31]

I would get in touch with the 25% M.E Group or Invest in M.E as there are lots of people in similar situations as yourself.

I look after my husband as we both have M.E - it's how we met 20 years ago - although we aren't bedbound fortunately.

Your daughter needs blood tests for thyroid, vitamin D, B12, Ferritin to check for other things alongside the M.E.

Karen

[Kim-007-mathews in reply to klr31]

Had those tests done. She’s on 125mig thyroxine now, takes extra vitD and calcium too.

She also had blood tests for food intolerances which came up with some things.

Our dr has been very cooperative and has done done lots of tests over the past 2 years.

I do have help, my husband when not at work is very supportive.

The local council are very helpful too. Laura has a PA which is paid for by adult social care, plus 4 respite times for me and my husband to get away. A paid carer sleeps in. My carers allowance pays for my cleaner!

But life is still very tiring for me.

[klr31]

Has she gone gluten free? Glad your doctor is being supportive as well as the council. That is rare.

Karen

[Kim-007-mathews in reply to klr31]

Yes Karen, gluten free, dairy free and also several other intolerances.

[klr31]

That is often the way, I'm afraid.

Karen

[Mistral]

Hello Kim-007-mathews

My only child, my daughter was eventually diagnosed with Chronic Fatigue Syndrome over six years ago and since then she has been almost fully bed-bound. She contracted Swine Flue and never really regained her health, her immune system was obviously compromised as she caught every virus going and you could see her slowly deteriorating.

She had a stressful job with the Probation Service. She was eventually dismissed and since then has spent nearly all her time in bed. Initally we requested blood tests from her GP which showed everything was "within the normal range" (where have we heard that statement before) - except her iron levels were low, she takes iron tablets every day, and hasn't see her GP for about 5 years.

At the beginning of last year my daughter was clearly deteriorating with even worse unbelievable aching and pain and terrible tiredness. I was given advice by a retired GP to have saliva tests done by Blue Horizon Laboratories which showed her cortisol levels were very very low, in fact the Retired GP said she had Addison's Disease. She was 39 last September.

I am sure you are like me, It is devastating to see your child's youth pass them by

I too was deteriorating with the same symptoms (I thought it was just stress and overwork looking after her) and had the same test done, my cortisol levels were almost flat lining. My GP and endocrinologists would not accept the laboratory results, and since then, with advice I have had to source on line either Prednisolone or Hydrocortisone for both of us (daughter would not make an appointment with her GP, as she didn't want the terrible stress I went through). It is known that having thyroid problems and cortisol problems often go hand in hand, but again her NHS Thyroid test came back "within normal range."

However it was a relief in one respect that we knew what was wrong with us, bad news Addison's Disease can be life threatening, and the only back-up for us if we collapsed would be the rubber medical bracelet that I bought for both of us that states we are "Steroid Dependent/Adrenenal insufficiency."

It is very hard work looking after her, housework, shopping, washing ironing, and she lives quite a distance from me, so my heart goes out to you, I am sure you don't need to be told that life is not easy being a full-time carer, I am now 71 and it is taking its toll on me. I was told that I may have passed Addison's on to my daughter. We have both put weight on with this steroid, I was so ignorant I didn't realise it was a hormone. This hormone is taken in small doeses 3 times a day and it has helped me, but I was devastated when it didn't help my daughter in the same way. She said it had helped a little but not enough. I still get tired but I am 'old' and feel I am worked to death but there is no alternative. My husband was a good help at one time but we are waiting for an appointment for him to be seen at a memory clinic, life doesn't get any easier does it?

[Kim-007-mathews in reply to Mistral]

Oh Mistral, what a story!

It is so difficult caring for loved ones, you must be tired out x

The local council and adult care have been brilliant, giving us finance for respite care etc, but it doesn’t take away the pain of watching a life seemingly wasted. My family have a faith and believe Jesus is in control and that all things happen for a purpose. Hanging on by our finger tips.

Where about are you?

[klr31 in reply to Mistral]

Don't take doctors' word for it that your blood tests are all within range, especially thyroid blood tests. You are entitled to a printout. Doctors' appreciation of ranges is wrong. Your daughter may need thyroxine and it may help.

Karen

[secrets22]

I so feel for you and your daughter as i also suffered ME/CFS for many years but it was manageable until now,and its come back with a vengeance and its horrible.x