It's been a challenging few weeks, physically, mentally, and emotionally. This week I've felt my body become weaker and weaker. What started as a small numb patch, began to slowly spread over almost half my body. I wondered if it would engulf me. But I say to myself, best not to panic.
It's a funny old thing this MS malarkey, you never really know where it's going to go, which path it's going to take you on. You never really know what's going to happen next, will the numbness spread further? Will the weakness take away the use of your legs, completely? Will you be able to use those blinking garden steps, that's just cost you a small fortune to install? But I say to myself, best not to panic.
There's a lot of stresses and strains going on here at the moment. I'm physically exhausted from the gardening, even though I've had lots of help. I'm frustrated by the restrictions of my body, coming many years earlier than I ever thought they would. In my head I want to zoom around doing all sorts of stuff, but now even the smallest activity can leave me wrung out. But I say to myself, best not to panic.
I've been emotionally challenged by motherhood this week too. It's such an important job, but the absence of energy, and the complexities of my little, quirky family, make me feel wholly inadequate. What if I can't be what they need to be? Am I up to the many years of adolescence ahead of me? Even as young adults they will still need me to be there, have I got what's needed? But I say to myself, best not to panic.
Mentally, I'm frustrated. A few years ago I wasn't treated fairly, it's cost me dearly, both financially, and affected my self worth. I've got a battle ahead of me and it seems so unfair. I'm angry that what little energy I have, needs to be spent on a fight. I need that energy for my family, for myself. I don't want to fight this fight. I shouldn't be fighting this fight. I'm fighting a giant, and that's a worry. But I say to myself, best not to panic.
I'm not one to panic, on the whole, I take what's thrown at me in my stride. This week however, I feel overwhelmed by the path I'm on. I know there are many, many people on much more difficult paths...in fact they would think my path is relatively easy. They would swap me in the blink of an eye. I'm overwhelmed because I'm so exhausted, that's all. Things usually work out, and if they don't, there's usually a way of of dealing with things. It really is best not to panic.
Amanda :) xxx
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poor you.You really are having a rough time.Parenting is difficult when your health is perfect but given an illness like yours it is hard going.Kids just don't understand.They don't know that feeling of weariness and complete lack of energy.I am sure you will come out of this sticky patch and bounce back again into that gorgeous garden of yours.How I envy all those raised beds. And that garden room.
ReplyDeletekeep your chin up .You will get through it.Thinking of you and sending hugs.Barbara
Thank you Barbara, I have the best kids but because of the complexities of their needs they need lots of energy. My garden will revive me, well when all the hard work is done! ;) xxx
DeleteI really hope your physical problems can recede soon. As for the adolescent stage, I can confirm that, although it can be a bit torrid, it frequently comes good, too. Young people are often amazingly thoughtful, too.
ReplyDeleteI hope you can rest and that helps you
I'm sure it will...thank you sweetheart :) xxx
DeleteI don't know what to say to you. The whole MS journey sounds horrific and you have been so brave. Hopefully you will be able to cope, get some good advice and help from your medical team, friends and family. In the meantime, try to be gentle on yourself - don't try to do too much and stress your body even further. Accept help, take your time to do jobs - the garden can wait or be done by other people. I am thinking of you and wishing you better health.
ReplyDeleteThanks Linda, it's the unpredictability that's the stressful bit. Rest, rest, rest, that's what's needed :) xxx
DeleteI have a chronic potentially life threatening illness and I really understand this post. Thank you.
ReplyDeleteSending you a big, gentle hug Lynn :) xxx
DeleteI'm sorry you've had a rubbish week. I know I for one forget about your MS as you're so good not ever seeming to let it get to you. I hope you get some respite soon. Your garden looks amazing though, very lush and green :)
ReplyDeleteAs for the parenting, I think worrying that your doing a good enough job of parenting means that in fact you definitely are doing a good job.
Hang in there,
Jillxo
Wise words Jill, thank you, I'm always questioning if I'm doing a good job...I do the best I can, can't really do more than that. Our girls are very much loved by both of us, and during my career I saw plenty of unloved children :) xxx
DeleteYou are an inspiration to us all. The fight is frustrating but may help those that follow you. Take care x
ReplyDeleteThank you so much :) xxx
DeleteAmanda, I'm truly sorry you're having such a rough time of it at the moment. I am always amazed by your strength and the way you deal with what's thrown at you without complaint. I hope you're able to have some rest and get stronger. When things are tricky here I sometimes reach the point where I just have to take one day at a time and try not to worry too much about the bigger picture. I'm sending you my very best wishes. You are an absolute star, and I feel sure that you will be a match for the fight that you are being forced to go through and that you will continue to be an amazing and inspirational mum. Sending you a cyber hug. CJ xx
ReplyDeleteCJ, thanks my dear, I think I need to get over the angry of the injustice and just go for it, at least then my energies aren't wasted. Anger is such a draining emotion isn't it? :) xxx
DeleteHi Amanda, I am touched by your post today and I can understand how you feel. I suffer from a chronic pain condition which has taken away a great deal of my mobility. I have many side effects from medication and other ailments brought on by the original diagnosis. I also experience great exhaustion from trying to live with my limited energy levels and fulfil my daily routine. I agree that sometimes there are fights which you shouldn't have to fight and these are usually caused by others who either don't care about the consequences of their words/actions or don't care about others. I can get the feeling of being overwhelmed at times and I like you tend to tell myself not to worry etc but I also have to remember that it's OK to feel this way at times. I am now unable to work but I volunteer às a counsellor working with people who are affected by cancer. I also use knitting and crocheting as therapy.I wish you all the best from Scotland, take care Audrey
ReplyDeleteHi Audrey, thank you so much for your encouraging words. I think it's brilliant what you do, you must be a inspiration to those around you :) xxx
DeleteYou are a brave, brave lady! You are right, it is best not to panic but your situation is indeed overwhelming. Are you able to invest in the help of friends to assist you with fighting your fight? Take time out for yourself as much as possible and rest up. Thinking of you. xx
ReplyDeleteHi Sweetheart, I've got a get friend who's helping me its all the red tape and inflexibility of my past employer that's the frustrating bit. Please email me with your address...still need to send you something! :) xxx
DeleteI think you are a amazing person and love reading your blog....You always have such a great out look towards life, hang in there...
ReplyDeleteMandy
Thank you, so much :) xxx
DeleteHello Amanda, I've not looked at VSA (I'm a fellow VS lover) for a while but so pleased you are still writing. What enormous challenges you are now facing in your life, but you are handling it with such grace and sense. Keep blogging and focus on the things you love, you have a beautiful eye for the little things of joy in life! x
ReplyDeleteThanks Patsy...it's the little things that keep us going :) xxx
DeleteDear Amanda: I am so sorry that you are in this tough time. I look for your post everyday and take great joy in the world you create and share; it gives me pleasure and comfort with my own challenges. All best hopes and wishes for healing and renewal.
ReplyDeleteThank you, and I'm sending you hope and healing too :) xxx
DeleteYour attitude is inspiring and I really hope your health improves with rest. God Bless.
ReplyDeleteWendy
Thank you, it usually improves if I take things easy but I'm a bit of a rebel and resting doesn't alway come easy to me! ;) xxx
DeleteAmanda so sad to read your MS has reared its ugly head as you say best not to panic, hopefully it calm down quickly and leave you able to continue with your chores etc. Such happenings in your garden but now is the time to rest and delegate the jobs, watch from your studio and get fresh energy. If lie here it is too cold to be out, rain, hail and a bit of snow yesterday, sun out now but still very cold. You and the family are in my prayers, thinking of you all take care and try and rest. Sorry seem to have prattled
ReplyDeleteIt's freezing isn't it Margaret, the sun is shining here at the moment but the temperatures are so low...and thank you for including me in your prayer list too :) xxx
DeleteAmongst her many health issues my friend also hs fibromyalgia. She too is fighting a giant, but is determined to take her fight to the giant's boss*. she is determined. and will probably win.
ReplyDeleteIf you can, fight one hour at a time, or maybe just 15 minutes.
Take care, love x
*Huge, massive, legal giant. and all because someone couldnt do their sums.
Sending strength to your friend...mines very similar, a decision was made not using the correct procedures and the impact was huge for me and my family :) xxx
DeleteOh Amanda, so, so tough for you! Sending hugs and prayers. Sharon x
ReplyDeleteNeed to get my big muscles out Sharon, think they are in one of my lovely cupboards! ;) xxx
DeleteReally sorry your having a bad time, hang in there girl, don't give up xxx
ReplyDeleteThanks...I'm hanging! ;) xxx
DeleteSending you big HUGS
ReplyDeleteJulie xxxxxx
Thank you Julie :) xxx
DeleteWhat can I say! My very best wishes to you in hoping that you feel brighter and stronger soon. I am a keen gardner but am getting over chicken pox at the moment and so have just been enjoying the fruits if previous labours rather than worry about what now needs doing. Not always so easy. Take care and be kind to yourself. You are amazing. Liz
ReplyDeleteOuch, chicken pox as a child is bad enough but as an adult must be awful...wishing you a speedy recovery Liz :) xxx
DeleteWords I think of when I read your post are Brave ( capital B ) and Inspiring ( capital I ) , take it all one day and one step at a time - hope you slay that giant and the kids will be fine, I have an teen, fire and brimstone one minute, sunny blue skies the next! You are awesome! Very best wishes, Suzie M x
ReplyDeleteSuzie, thank you so, so much! :) xxx
DeleteHang in there and I know it's not easy. Postive thinking is very important especially with a chronic illness. You will be able to do what is needed when the time comes. I think you are an amazing person and I know that you inspire me. Remember what you were like at the age of your children! But then maybe you were the Good Child but I was the Bad Child so I always look back and think how blessed I've been with my own daughter and granddaughters. LOL Sometimes just laugh at all the stress and help it to go away!!!!!!!!!!!!
ReplyDeleteThank you Judy- belly laughs are the best medicine going! ;) xxx
DeleteHoping for better times ahead. Take care of yourself. Sending good thoughts and hugs! xx
ReplyDeleteOh bless you Amanda, I know what you mean and really we do deal with whatever we have to but some times it does seem unfair when 'your precious energy' is used up in a way you would rather it wasn't.Hang in there. Are you able to pace yourself with MS or not? I know that is something my daughter with ME tries to do, not always easy mind you. I have used Autogenic technique for years and it helps with the stress. I did have a good teacher, once learnt it can be done anywhere. Do take care of yourself.
ReplyDeleteThanks Alison, I try very hard to manage my energy and stress levels, things seem to have come all at once just lately, I've felt a bit better over the last couple of days. Sending a hug to your daughter :) xxx
ReplyDeleteMy brother in law has MS and he is one of the strongest, determined and hard working people I know. He struggles as well, but he won't give in. He falls and he just picks himself back up. My sister has said many times that he deals with his MS better than she ever could, under the same circumstances. I also find her abilities to cope are very impressive as well. My BIL has gone through many ups and downs and things he's had problems with have often gone away on their own. Sometimes to be replaced with a different challenge. I hope getting plenty of rest will help you turn this current challenge around and get you feeling better real soon. Ranee
ReplyDeleteHello, Ranee, your brother in law sounds fab. It takes real strength to face something like MS each day, for a partner too. I'm feeling much better now I've rested up. Thank you so much for spending time to leave me your comment...sending my best wishes to you BIL and your sister too :) xxx
DeleteI am sad to read about your health problems, Amanda. From here I can only think and pray for you. Hope, hope, you will feel better.
ReplyDeleteTake care,
Miriam
Thanks Miriam, I'm rearing as much as possible and it's paying off :) xxx
DeleteSo sorry to hear that you have a challenging few weeks it must be so frustrating that you can't do everything you want to and your energy is being used up on the injustice you have suffered. I do hope it can be resolved sooner rather than later and then you can have more time to relax and enjoy your garden. Sarah x
ReplyDeleteThanks Sarah, I've rested lots so I'm beginning to feel much better...I'm shelving the whole legal stuff for a few weeks then I'm on it again! :) xxx
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