One day at a time
My first journal entry...
I am coming to grips with the fact that my daughter's Fibro is here to stay for now. Accepting it as a disability has been a long process for me probably because I watch her struggle with pain and fatigue daily. Her appetite is up and down (mostly down at the moment), she can only eat a few things and very little of those at that. She is, herself struggling to accept the disabling side of things. Only just starting to realise the long term effect this will have on her life. We are waiting anxiously for her service dog to be ready for her as we can both see the benefits it will bring. Knowing the dog is being trained at the moment really helps her cope a bit better emotionally. I am learning to cope a lot better in my role as caregiver. Learning tricks that will help her to be more comfortable, figuring out ways to reduce her pain and stress. We have been finding out which of our 'friends' are actually 'frenemies' and which are the real deal. Making new friends through this group has been a blessing!
All this makes one re-assess one's life. Draw a line and say that this was the past - now THIS is our new reality... make adjustments, re-arrange priorities etc.Several of our frenemies comment on how hard it must be etc. I wish I could make them understand that we do whatever it is our loved ones need. It isn't a sacrifice for me, just a different way of life. The moment people start focusing on how much they 'gave up' that is when they start feeling down and getting resentful towards the one suffering and others whose lives are different. I love my daughter very much - it is no sacrifice. The same as I love my husband and son very much and dealling with our Asperger's is also just a way of life.
I am coming to grips with the fact that my daughter's Fibro is here to stay for now. Accepting it as a disability has been a long process for me probably because I watch her struggle with pain and fatigue daily. Her appetite is up and down (mostly down at the moment), she can only eat a few things and very little of those at that. She is, herself struggling to accept the disabling side of things. Only just starting to realise the long term effect this will have on her life. We are waiting anxiously for her service dog to be ready for her as we can both see the benefits it will bring. Knowing the dog is being trained at the moment really helps her cope a bit better emotionally. I am learning to cope a lot better in my role as caregiver. Learning tricks that will help her to be more comfortable, figuring out ways to reduce her pain and stress. We have been finding out which of our 'friends' are actually 'frenemies' and which are the real deal. Making new friends through this group has been a blessing!
All this makes one re-assess one's life. Draw a line and say that this was the past - now THIS is our new reality... make adjustments, re-arrange priorities etc.Several of our frenemies comment on how hard it must be etc. I wish I could make them understand that we do whatever it is our loved ones need. It isn't a sacrifice for me, just a different way of life. The moment people start focusing on how much they 'gave up' that is when they start feeling down and getting resentful towards the one suffering and others whose lives are different. I love my daughter very much - it is no sacrifice. The same as I love my husband and son very much and dealling with our Asperger's is also just a way of life.
Replies
I am impressed by your outlook and the \"frenemies\" word you came up with. As a families illness or illnesses get bad you find out who your true friends are. Most back away, few step up, even those that could. You are right, focusing on how much was \"given up\" can make the difference between dealing with a situation and being overwhelmed by it. I pray for calm and pleasant days for you and relief for your daughters pain. Hugs, Sandy
Thanks Sandy. It is support from people like you that has really helped me over the last few weeks. Knowing someone is out there who understands. The \'frenemies\' is a word used by a blind friend of ours who has much to say about those who pretend to be a friend only to drop you or take advantage of you when it suits them to do so. She is a really sweet person who took time to read up on fibro when she met us - something my own parents couldn\'t be bothered to do!
Hello, lowernotes- Welcome to journaling! To journal is very therapeutic for me & I hope you find the same to be true. I am sad to read about your family struggles, but glad you have a great attitude towards Caregiving & Frenemies. I believe you will find true friends here at DS!
My prayers for your family\'s well being & for yours. Remember to always make time to take care of yourself!
Hugs, MelodyJane
Thanks MelodyJane. I have never tried journaling before, but I must say I found it therapeutic too.Thank you for your support and prayers.
As trials come our way we MUST take one day at a time....sometimes hour by hour :)
Sometimes moment by moment...having friends like you guys really helps
I was diagnosed with fibro 20 years ago and there are many things that have enabled me to have a productive life. I do have bad days of pain but I have managed it for the most part. If you like I can give you some suggestions as to what has helped me. Just let me know... Bless you both!
kathilee, absolutely I would love suggestions - maybe there is something that has helped you that can help my daughter too!
Massage therapy and acupuncture helps with pain and sleep..
stretching and yoga for stress relief and whole foods and very little processed foods also. I take magnesium supplement (powdered mixed with water) helps relax muscles and tension and helps with pain....also vitamin c and omega 3 good for depression and mood..helps brain! Natural pain relief drink is .5 tsp ginger, .5 tsp turmeric and raw honey mixed in almond milk and warmed up...Once the routine is there its easier..I have no cane or wheel chair and am functioning quite well as I mentioned although a fulltime job I cant do..so I am self employed but I did have a fulltime job on my feet for 5 years but was taking a lot of pain meds and I ruined my digestive sytem with that and couldn\'t work anymore. Now I am really cautious ..I read a lot about fibro and whats helps. I really do think these things will help your daughter!!!
oh and forgot to mention gel pac which I heat in the microwave for ..also I have a portable tens machine which I purchased for about 100 dollars..its very helpful for pain!! maybe you know most of these things not sure. Your daughter is blessed to have you as a mother because my mother never did one thing to help me..with my struggles..in fact she would put more pressure on me... in many ways
Massage we plan to try - I spoke to a physio today and asked if she would teach me what I need to know to help my daughter. we cannot afford to have her go there, I explained the situation and the physio is going to help us. Acupuncture - we will look into. This physio does that too, so we will see. That I am not trying to do myself!
I will look into a stretching regime for her and go through it with her - good idea. She can do that even when she can\'t get out of bed.
We are already taking calcium and magnesium suppliments at night. It has vitamin D in it too and that seems to help her sleep more deeply.
The omega oils - she is taking a 3,6 and 9 combination daily - I can try increasing the dose next week and see if there is more benefit. She has only been on them for a week. Any idea how long it will take to see and effect from the vitamins etc?
We can\'t find a vitamin C that she can take - we have tried suppliments, citrus, strawberries etc. She reacts badly to all of them. This is a real concern as I know how important it is. When we can get kiwi/guava/prickly pear she has as much as she can eat. In prickly pear season the hawker that comes round knows to save us lots and is very sweet about sending her children to outlying farms to pick them right to the end of the season.
I will try the tumeric, ginger and honey in warm milk. It should work fine in cow\'s milk - she drinks a lot of that. We tried cutting it out and she just got worse. I think she needs the tryptophan in it to process the serotonin suppliment.
She is using a beanbag heated in the microwave and our scottie and her cat for added warmth. Winter is just getting here so the electric blanket will go on her bed this week.
We have a tens machine - Wonderful invention that! My other daughter used it through labour for both of her children (I wonder if a 1 hour labour counts as labour - lucky girl!) She had home births assisted only by her partner and the tens machine was all she needed. Around here the tens machine costs about R1000 (South African Rands)
I can\'t imagine not helping my daughter - not all of our family is supportive though. Thankfully the unsupportive ones we can avoid for the most part and suround ourselves with the ones who make an effort to understand.
Try a probiotic supplement and yogurt which will help her not react to the vitamin c..(I take a powdered one and the effects will be immediate and then improve even more after that. I used to react to many foods until I took the probiotics. Yes cows milk is good (I drink it too) but too much calcium supplement can cause problems i used to take calcium and it made me worse. Most of us have too much omega 6 already and we don\'t need it because its in a lot of foods..So omega 3 by itself is better. I am so glad you have a tens machine!! what is R1000 rands equal too in Canadian? I live in Canada. I am happy if any of this info will help you but you already sound like you are on the right track..one more thing I just remembered is Epsom salt baths..really help me a lot!! You also have a great physiotherapist to teach you massage..awesome..i will pray for you if that\'s okay :)( less calcium and Much more magnesium is helping me so much!
Probiotics - good plan. We have tried vitamin C powder before too, just so she can have 1 grain as a start - still no go. But maybe if I put her on a good probiotic for a few days first and then try it.....
I used epsom salts for sore muscles after exercise - so that was a natural progression for us...
I wil look for a magnesium suppliment without the calcium for her - that may help.
At the moment milk, cooked apple and a few other things are all she can eat. She has just started eating meat again - sometimes. Her glands have been very swollen for the last five weeks (parotitis - the doc called it) and she has had difficulty swallowing. So I think a calcium free suppliment rather than cutting milk is the way to go for us as a first step. Then to see where else she can get tryptophan before trying to cut milk again.
I think I followed a wrong career path in choosing dog training and grooming! I should have gone nutritionist/nurse/dietitian:-) I actually did an online course in nutrition and it has helped me understand a lot more.
I don\'t think she needs to eliminate milk...just the calcium supplement as you say..I pray she can eat more soon...There was a time when I stopped eating and I got so much worse..Its great that you took the online course :) dogs are great too! we have a golden lab 11 years old. Hes so good.
Bless you
we are going to be getting our first lab or golden retriever - hopefully this year. A service dog. I looked into training one and then found that the Guide Dog association trains them specially:-) our pup is in training at the moment. I have always trained dogs in obedience, agility and a little defence work, this is a new area for me but I am really looking forward to it. The labs seem to be wonderful dogs.
Thanks for all the suggestions and prayers every one is appreciated.