Groundhog Day?
Well, this is my first journal entry - I'm hoping this will help me to vent my fears and frustrations and also give me something to look back on through the good and bad days (without clogging up the discussion board on here!!
I am struggling these last 2 weeks since the girls broke up from school - the unusually hot weather here hasn't really helped but I have been grateful for it as I can sit in the shade and let the girls run around the garden which has eased the guilt I feel about the girls missing out on things because of me......a little! I feel like I wake up in the morning and my eye is droopy already - maybe it's sleeping in the heat which is unusual here in the UK!! By the time I get up, wake and dress the girls and myself and have us all ready to leave the house I just want to drag my droopy face back to bed!!! Everything feels heavy, my legs, my arms, my head - I am starting to look pale and exhausted on top of droopy! Is it normal to look ill with this?? Everything is such an effort - I manage to get through the morning working somehow and then home in time for the girls to come home (usually I my eldest would be at school and I could lie on the sofa while my youngest played but with school holidays I have 2 energetic children to entertain all afternoon so I either wear myself out having children to play or feel guilty if I try to rest!) Then it is teatime, bath-time and bedtime which feels like climbing a mountain!! When they are both tucked up in bed I usually flop onto mine and feel my heart racing - its like the effort to just be upright is taking all the energy I have!! I struggle to have the energy to do anything beyond that - even television is draining and I don't have the energy for the concentration....or to focus my blurring vision!! I feel so sorry for my wonderful Dan as he lies with me so patiently putting music on and just talking to me as I lie there....I am definitely not the girl he met 2 years ago!! I rarely move from my bed in the evenings at the moment, occasionally I make it to the sofa but I find it hard to get comfortable - my neck is heavy and causes tension headaches, my legs aches and my breathing/swallowing can become difficult and I either need to sit straight or lie down - it is just easier to lie in the bed under the fan!! Many nights Dan will rub my aching muscles but I usually just feel weaker after - sometimes in the second I try to stand I don't trust my brain or muscles to know how to stand, let alone walk - it's like my legs don't belong to me or have forgotten what to do!!
This is my life, everyday the same, just barely making it through just to start all over again....Groundhog day. I feel trapped, I just want to get out of my body and run!!
I still have no diagnosis and I have been waiting 2 months for nerve/muscle tests and still no appointment in sight....my logic is that diaries must run at least 4-6 weeks ahead so to have no appointment allocated to me must mean that when it does arrive I will have at least that amount of time to wait until my date! Can I keep going that long?? I want to DO something not surrender to this limbo - but there is little I can do and to add further turmoil.....I also don't want my symptoms to get better just yet as I need them to be bad for when I finally get the tests.....it has taken 9 years to get here and I need answers.....but (yup, you guessed it - more over-analyzing turmoil!!) I have read so many stories about people with all the symptoms getting negative tests and had such a rocky road getting here that I don't hold out much hope for them. I can't win!! I am also scared as some people on Neuro talk have said my symptoms and photos seem to suggest my symptoms are mild and more severe symptoms have yielded negative test results so do I even stand a chance?!?!?!? I firmly believe I have MG - there is nothing else that fits how I feel....but I'm not sure, at this point in time, with the current tests, that it will be proven....and that is the hardest thing to deal with as I know I will be left to live this non-existence, half-a-life struggle that I am currently living and all the plans I have for when I am better will slip further away....and I worry for my family and how this will affect us all long-term.
On my better days I can reason with myself - I have 2 beautiful girls that I can see, feel and hold, okay - I can't run around like before but I am still very lucky. I have some very good friends who, along with my family, support me as best they can. I have an amazing partner who is patient and understanding beyond anything I could hope or wish for - he loves me and still thinks I am beautiful despite my droopy face but I am scared for his optimism - he truly believes I will have my diagnosis and treatment and be better once again, but I have been here before - I have met Dr's all keen to help until their tests show nothing and I am dismissed to get on with it.....again. I pray that he is right and this will be it, but I can't set myself up for that fall and I want to protect him from it too. all in all - I am very lucky and from reading on here, I know I could be a lot worse....but right now, my positive side is failing, the overwhelming symptoms are taking over and I am struggling to see past them.
Mum and Dad have offered to pay for the expensive tests privately today to cut the waiting time as they see me looking more and more exhausted (bless them!) - but I can't justify them paying for tests that I don't really have any faith and and which could end up a waste of money - that would just make a negative test so much harder knowing they paid so much for it!! My Neuro's secretary said I could ask my GP for an urgent referral to bump me up the list if I felt my symptoms getting worse but I don't feel my symptoms warrant that either - my walking is ok at the moment (but I don't exercise at all and the max I probably walk is at work and that would only be 30 steps from and to the car....and even that can feel like a marathon!) my breathing is also manageable and I don't feel its right to make a fuss when I can manage and there are probably others far worse than me!!
I suppose all that is left is for Groundhog Day to continue and for me to try to pull myself together and stop feeling sorry myself!! Lets hope next week is better and my second journal entry is more cheerful and less depressing that this one!!
I am struggling these last 2 weeks since the girls broke up from school - the unusually hot weather here hasn't really helped but I have been grateful for it as I can sit in the shade and let the girls run around the garden which has eased the guilt I feel about the girls missing out on things because of me......a little! I feel like I wake up in the morning and my eye is droopy already - maybe it's sleeping in the heat which is unusual here in the UK!! By the time I get up, wake and dress the girls and myself and have us all ready to leave the house I just want to drag my droopy face back to bed!!! Everything feels heavy, my legs, my arms, my head - I am starting to look pale and exhausted on top of droopy! Is it normal to look ill with this?? Everything is such an effort - I manage to get through the morning working somehow and then home in time for the girls to come home (usually I my eldest would be at school and I could lie on the sofa while my youngest played but with school holidays I have 2 energetic children to entertain all afternoon so I either wear myself out having children to play or feel guilty if I try to rest!) Then it is teatime, bath-time and bedtime which feels like climbing a mountain!! When they are both tucked up in bed I usually flop onto mine and feel my heart racing - its like the effort to just be upright is taking all the energy I have!! I struggle to have the energy to do anything beyond that - even television is draining and I don't have the energy for the concentration....or to focus my blurring vision!! I feel so sorry for my wonderful Dan as he lies with me so patiently putting music on and just talking to me as I lie there....I am definitely not the girl he met 2 years ago!! I rarely move from my bed in the evenings at the moment, occasionally I make it to the sofa but I find it hard to get comfortable - my neck is heavy and causes tension headaches, my legs aches and my breathing/swallowing can become difficult and I either need to sit straight or lie down - it is just easier to lie in the bed under the fan!! Many nights Dan will rub my aching muscles but I usually just feel weaker after - sometimes in the second I try to stand I don't trust my brain or muscles to know how to stand, let alone walk - it's like my legs don't belong to me or have forgotten what to do!!
This is my life, everyday the same, just barely making it through just to start all over again....Groundhog day. I feel trapped, I just want to get out of my body and run!!
I still have no diagnosis and I have been waiting 2 months for nerve/muscle tests and still no appointment in sight....my logic is that diaries must run at least 4-6 weeks ahead so to have no appointment allocated to me must mean that when it does arrive I will have at least that amount of time to wait until my date! Can I keep going that long?? I want to DO something not surrender to this limbo - but there is little I can do and to add further turmoil.....I also don't want my symptoms to get better just yet as I need them to be bad for when I finally get the tests.....it has taken 9 years to get here and I need answers.....but (yup, you guessed it - more over-analyzing turmoil!!) I have read so many stories about people with all the symptoms getting negative tests and had such a rocky road getting here that I don't hold out much hope for them. I can't win!! I am also scared as some people on Neuro talk have said my symptoms and photos seem to suggest my symptoms are mild and more severe symptoms have yielded negative test results so do I even stand a chance?!?!?!? I firmly believe I have MG - there is nothing else that fits how I feel....but I'm not sure, at this point in time, with the current tests, that it will be proven....and that is the hardest thing to deal with as I know I will be left to live this non-existence, half-a-life struggle that I am currently living and all the plans I have for when I am better will slip further away....and I worry for my family and how this will affect us all long-term.
On my better days I can reason with myself - I have 2 beautiful girls that I can see, feel and hold, okay - I can't run around like before but I am still very lucky. I have some very good friends who, along with my family, support me as best they can. I have an amazing partner who is patient and understanding beyond anything I could hope or wish for - he loves me and still thinks I am beautiful despite my droopy face but I am scared for his optimism - he truly believes I will have my diagnosis and treatment and be better once again, but I have been here before - I have met Dr's all keen to help until their tests show nothing and I am dismissed to get on with it.....again. I pray that he is right and this will be it, but I can't set myself up for that fall and I want to protect him from it too. all in all - I am very lucky and from reading on here, I know I could be a lot worse....but right now, my positive side is failing, the overwhelming symptoms are taking over and I am struggling to see past them.
Mum and Dad have offered to pay for the expensive tests privately today to cut the waiting time as they see me looking more and more exhausted (bless them!) - but I can't justify them paying for tests that I don't really have any faith and and which could end up a waste of money - that would just make a negative test so much harder knowing they paid so much for it!! My Neuro's secretary said I could ask my GP for an urgent referral to bump me up the list if I felt my symptoms getting worse but I don't feel my symptoms warrant that either - my walking is ok at the moment (but I don't exercise at all and the max I probably walk is at work and that would only be 30 steps from and to the car....and even that can feel like a marathon!) my breathing is also manageable and I don't feel its right to make a fuss when I can manage and there are probably others far worse than me!!
I suppose all that is left is for Groundhog Day to continue and for me to try to pull myself together and stop feeling sorry myself!! Lets hope next week is better and my second journal entry is more cheerful and less depressing that this one!!
Replies
I wish I had a magic answer for you to help you get the answers you need. If your neuros office is willing to move you up on the waiting list, please take it. You and your loving family deserve medical care for you.
hugs and well wishes from Florida.
Larissa
eve, Youur neuro said you needed treatment last month and your symptoms are interfering with your daily life. Would he be willing to start you on Mestinon to see if that would hellp while you wait for the tests. A marked response would also be helpful diagnostically. You can always go off the week before. Mestinon \"only\" helps with symptoms and if you are off for awhile will not affect testing for the problem. b.
Hi. So sorry to hear how much you are struggling. I remember how busy life was with young children. I\'m glad you have the support of your family. As you say it\'s good to write it all done. Believe me it will get better once you get a diagnosis and a good medical treatment plan. I agree with b - see if you can start on some mestinon. It may help you until you get further testing. Best wishes from across the seas in Melbourne. Gez
Your confidence is important. Hang on to it. Hugs!
Thank you all for your comments and support - it is such a comfort to have people who truly understand. Unfortunately, my Neuro warned me there would be a 2-3 month wait for tests (but I fear it is going to be longer than that!) and he said he wouldn\'t be happy to prescribe any medication due to their side effects until he was sure it is MG - so I assume he wants a positive test somewhere?
His secretary is very nice and when I have spoken to her to ask about my appointment she has been surprised herself at the long wait - she said she thinks I sound very nice and I am welcome to phone her anytime (which was lovely of her!) so I think I will contact her again early this week and see if she can help at all or offer any advice.
Can I ask if any of you can look pale/exhausted if you are pushing yourself? The MG nurse I spoke to said it was unusual to look or even feel particularly ill - she said that weakness was the only real symptom of MG. I do have times where it is just my droopiness that is evident but when I try to do more i start to look a little poorly with it?!
Thanks everyone for your support. Eve.x
Oh boy, even if we have the \"but you look so good disease,\" in the summer on no treatment, we may look as bad as we feel. That is not so good. The people that think it is OK to be weak and just rest haven\'t tried to LIVE. Hang in there, b.