9 months update
Posted , 9 users are following.
Last time i posted was 2 months ago and i basically outlined the fact that i hadn't experienced any alleviation in my symptoms whatsoever. I has just seen a specialist who put me on the Paleo diet which i then made even more strict to exclude carbs of any kind. The idea was to avoid any sharp rises and subsequent falls of my blood glucose levels.
I have begun to have some less bad days, 1 or 2 in a row, then back to utterly dreadful for no apparent reason. I'll continue to call them 'less bad days' because they're so far from what a normal person views as a 'good day' that its almost laughable.
Lets say that I never became unwell and i woke up one morning with one of my current 'less bad days'. It would easily be enough for me to ring up work and say I'm not coming in.
Today is especially bad, it feels as though im back to square 1 which is why I'm here, I need to talk about it. Im being so consistent with all of my days, trying to eliminate variables that could make me feel worse.
Overall I suppose the salient point I'm trying to make here is, woohoo! something different has finally happened, but boo! its still s**t.
As a side, im not sure if this is allowed on this forum but if anyone lives in or near Reading, Berks UK, id be keen to meet up and just discuss our experiences, i think it would be helpful.
sorry for long post, thanks,
Will
0 likes, 17 replies
Dodge81 will_53771
Posted
Sorry to hear you're still struggling. I'm at 9 months now and I know what you mean. What i consider a good day, or feeling ok..is no where near me feeling my normal self, which means I'm on a constant 'I must take it easy mode'. The start of this virus was the absolute worse, which would of been the first 5 months...but back then I was so spaced out I didn't care about anything or anyone. I would say months 6, 7 and 8 have been very difficult as it feels like I've got my mind back, I now care about things and other people, but know still I can't do a lot of things I want to and have days where I feel like death. I don't want to speak too soon as I know how easy it is to have set backs on this virus, but I do feel a tiny bit better than say a month ago, albeit I still struggle. Just hoping month 9 continues to gradually ease up, so on month 10 I can say the same thing.
will_53771 Dodge81
Posted
hi, thanks for the reply, sounds like we might be at a similar point. I too can think more clearly and am able to organise my thoughts better (only on some days it must be said). At my worst I could barely speak in full sentences. For me the brain fog is still the worst feeling, i can take the painful joints, muscles etc, but i just want a clear head. There hasnt been a single moment when ive had that. 10 months has been a turning point for some people, hopefully we can power through this soon.
Dodge81 will_53771
Posted
I've said the same to people close to me, if my head would just clear, I feel I could get on with life....but I kinda think all the other symptoms such as the aches etc are the reason for the uncomfortable dull ache and spaced out feeling in my head...or vice versa.
Dodge81 will_53771
Posted
Sorry to hear you're still struggling. I'm at 9 months now and I know what you mean. What i consider a good day, or feeling ok..is no where near me feeling my normal self, which means I'm on a constant 'I must take it easy mode'. The start of this virus was the absolute worse, which would of been the first 5 months...but back then I was so spaced out I didn't care about anything or anyone. I would say months 6, 7 and 8 have been very difficult as it feels like I've got my mind back, I now care about things and other people, but know still I can't do a lot of things I want to and have days where I feel like death. I don't want to speak too soon as I know how easy it is to have set backs on this virus, but I do feel a tiny bit better than say a month ago, albeit I still struggle. Just hoping month 9 continues to gradually ease up, so on month 10 I can say the same thing.
40with.gf. will_53771
Posted
Hi Will,
I know how i wanted to compare my symptoms and hear other peoples stories when i was ill. i just wanted to hear that i was going to get better and that the hell would go away for definite one day. its quite unbelievable (I thought) how you could be ill for so long? It was so infuriating that my body just couldn't do it! To keep my story short, year one was horrible, really dreadful. year two so much better.....I'm now at the end of year two and i would say practically 100% better. the only thing i have yet to do is start back up my exercise classes. although i am still quite energetic in my day to day life.
i just want you to know and anyone reading this that you do get better, eventually. you need to look after yourself, eat well and listen to your body, get up do stuff but also lay down when you know you cant carry on. its tough, so tough and two years seems a long time but recovery does happen.
i am in the uk, but not near reading.
you can ask me anything
take care
caroline.
david_65565 40with.gf.
Posted
Caroline ,
Thanks you so much for your positive post . I'm so happy for you to be able to say your health has returned . Its words like this that give the rest of us hope , THANKS AGAIN ! I'm starting month 11 with this nightmare although I'm doing better and better as time goes on I have a long way to full health . Like Dodge said when i have a good day its no where near good health its just not as bad as the bad days . I'm praying that i'm over the hump now and will see good improvements soon .
will_53771 40with.gf.
Posted
hi caroline,
My question to you is about the brain fog (if you had it that is). Has that completely gone for you now? At what point did it go? Was it so gradual that you could barely notice it improving or did it just stop over say a week or so?
I'm so glad to hear that youre virtually back to normal. For me its hard to believe that anything can last this long and then still get better. thanks 😃
Mono_too 40with.gf.
Posted
Hi Caroline,
Glad to hear you have recovered also. I have also found year two to be my full recovery year. We are remodeling my daughters house and I never thought I would be able to do that.
will_53771 Mono_too
Posted
hi, its definitely promising to people on here that youve made a full recovery! If i remember correctly your daughter had it as well? hows she getting on now? i might be thinking of someone esle though.
40with.gf. will_53771
Posted
Hey Will,
i didn't really have brain fog as such. i had lots of symptoms.
3 really bad stiff necks
incredibly achy arms
occasional headaches
loads and loads of crying, low moods
exhaustion. like i've never experienced.
breathlessness
burning thighs(noticeable at night mostly)
feeling nauseous.
The hardest thing is getting a bit better or having a good day or two (even though you still feel horrendous and no where near normal) then feeling worse again, its so hard to deal with, well, it was for me anyway. my body just couldn't carry on and this was so frustrating, i used to think it would never go and that i would never get better. my mum and husband had to reassure me all the time. Believe you will get better or should i say, know you will, a positive mind helps! because you will. its taken me this long but it's happened. i got this when i was 40.
i played a lot of candy crush to just take my mind off feeling awful. i did try and get up every day and do a little bit when i could, just go with the flow. or get out and get a bit of fresh air, whatever you can manage but don't push yourself. Just give in and go with it.
you WILL get better!
Caroline x
40with.gf. david_65565
Posted
Hi David,
It's such a tough time, it really is a living nightmare but hopefully you will be over it quicker than me, just can't tell when, but it will happen. looking back i used to say i was having a 'good day' but like you say, it's no where near comparable to a normal day..... it felt like i was on a roller coaster of bad days and good. i promise you, your second year will get a lot better, you will get more good days than bad. i kept a diary and wrote everything down.
It's so hard to tell how well you're doing sometimes as it is such a slow progress, i found that looking back rather than forward was easier, to see how far i had come.
take care
caroline x
40with.gf. Mono_too
Posted
Hi Mono,
oh it's great to hear from you, so lovely to hear you too are better and like you say back to doing stuff that you couldn't even possibly think you would be able to do again. fantastic news!!
What a dreadful couple of years eh!
keep in touch
caroline xx
craig07920 david_65565
Posted
Hi David,
I can really resonate with this that you raise about when you feel like you're having a good day that it still feels nowhere near like you did before and it can be very discouraging. I remember going through that too and thinking that I could never see my body resilience returning, or that my body would always be fragile and never able to cope with stress and normal levels of activity again. I thought David I was going to have to adapt to this new 'normal'.
But I absolutely want to reassure you that things don't stay this way forever. At 11 months, i was like you seeing some improvements but still feeling quite fragile and not anywhere near like fully recovered. But it's a process David, it takes time and your body resilience DOES come back, I absolutely want to reassure you of that, Year 2 was definitely a year of recovery for me and started to make some real good strides forward and feel more human again, and hoping so much that this will be for you too David - the first year is so intense and awful to deal with, but Year 2 was far better and your strength and health will return over time I do truly believe that, given my own experience and reading how that has happened for many people into that second year. I could still only work part-time in the second year but it was a massive achievement for me to be able to do that and by the end of the second year I was almost at full time working again, thanks to God only.
Thinking about you David and hang in there - you WILL get that breakthrough with this, it won't always be the way it is now, it really won't be there is recovery, hope and better times ahead.
Craig
craig07920 Mono_too
Posted
That is tremendous you have been able to do that remodeling at your daughter's house Mono too, a sign of great progress for sure! I hope you are feeling well and remember just not to overdo things too much still. Very much hoping for peace and good health for you and all your family this Christmas.
Craig
craig07920 will_53771
Posted
Hi Will,
It is good to see a post from you, empathising with what you are going through from my own experience of when the virus just seemed to go on and on without much improvement for a period of many months. Definitely just want to reassure you that there is still hope Will, there is recovery from this thing, it took me 10 months to see a big turning point, not saying it will take that long for you or anyone else but just to reassure it can be very normal to persist at a similar-ish level for a long time and then take a big step forward in a shorter space of time.
It's the living through the symptoms and emotions and ups and downs every day that is so hard and that I remember and that prompted me to come on the forum here hopefully to offer some hope to others as I know how much that meant to me when people offered me hope, compassion and good advice during the virus. So many people just don't fully appreciate how this thing makes you feel and how life changing an experience it can be. I definitely want you to know Will that things can and do get better, it's frustrating when you are stuck in the stage you are at just now, when it's been going on a while and can't seem to move forward, but it will come Will, I truly believe that given that it took me time to get there but thanks to God only was able to make a full recovery over time.
Hoping so much this bad day / spell you've had can settle down and that the coming week and Christmas period can offer new hope. I know this time of year particularly can be very hard when going through the virus, it was such a tough Christmas for me when I went through it. But you will get better Will, 2019 I hope, pray and believe will be your year of recovery - I have faith in that and remember there is hope because there is God who cares.
It's definitely a good suggestion to meet with others who have went through this - I am near Glasgow if wasn't so far away I would certainly have been keen to meet and chat, hoping there can be others in your area that can pick up the message and get in touch it would be a good thing. Would love it if this virtual support group here was able to be a real life support group if people weren't spread all over the country and world!!
Thinking of you Will and remember - stay strong and hang in there - you WILL get your breakthrough with this, you won't always feel how you feel now - 100% I believe that given my own recovery experience.
Craig
will_53771 craig07920
Posted
Hi Craig, thanks for your kind words as always. I must say its going to be hard for me to feel festive or jovial this christmas but i'll cross that bridge when i get to it lol.
ive got a date in my head - 6th March. This is the date i want there to be a good improvement by because it will be the one year mark. Things can only get better from there right!?
i'll be active on here for the next few days, then keep a look out for my next update which will be in the new year. Hope all is well with you, thanks again! Will
craig07920 will_53771
Posted
Hi Will,
Christmas can be a very hard time when going through this virus for sure Will, but remember you are going to get through this and there will be better times ahead. I know that's so hard to see or feel optimistic about when in the midst of this thing, it's an awful battle and drains you so much. Just hoping and praying for new strength and peace and good health for you Will, thinking about you. As you say just take one day at a time, cross any bridges when you come to them.
For me Will, and again it's just my own experience, as time went on I just found the way to try to cope with and approach recovery was not to look far ahead or try to set dates or timescales for recovery, rather just to try to cope with the here and now and remember that even if it takes a little longer then not to panic and it's okay because have God on side and He knows the bigger picture. I was so low at certain stages Will, just wondering if improvement would ever come, it was an awful time and it was only thanks to God I got there I know that for sure and grateful for that - and believing you will get there too.
Truly hoping and praying that 2019 is your year of recovery Will, believing you are going to be in good health again, and believing you have weathered the worst and most intense phase of this thing, but again remember recovery timescales different for everyone so don't panic if things not perfect by such and such a date, your body will get there with this it really will - and that is coming from me who was very much unsure it that would be the case too at a similar stage to the virus as you.
For the brain fog, vitamins and herbs that support the nervous system and brain function can be really good, like a strong B complex vitamin per day, co-enzyme Q10 and gingko biloba, I'm sure there are many others too though. Hang in there Will and truly believing you are going to get your breakthrough - hoping for a good and settled week and period ahead.
Craig