Hit a new low yesterday .

Posted , 4 users are following.

After 3 days doing a ‘bit better ‘ managed to go for a walk 3 days in a row  ... I crashed yesterday . The fatigue my God it made me feel literally nauseous and ill . In bed by 5.00 but so nervous and scared lying there.

I’ve had a number of those days since this started 6 months ago and they’re awful.

I don’t know how much longer I can stand this . I’m trying to be strong but that is also exhausting and my mind is so worn out .... my skin is crawling .. the mental aspect of this thing gets you so down you feel so weird all the time .

Just having a vent ... honestly don’t know how I’m getting through each day .help! Agh!!  

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11 Replies

  • Posted

    Hey Lori. Oy. I’m so sorry.  That’s perhaps the hardest part of this whole thing. You start to feel better and finally think you’re on the road to health and when you crash makes you feel like you’ve gone crazy. It’s so hard to keep the stamina and mental capacity to keep going at times. I completely understand it. The only comfort I can take is that my crashes have never been as bad as it was in the first couple months. Even though they suck and even though that fatigue is so scary it makes you feel like you’re dying – it doesn’t last for months again.   Hang in there. When I get like that I always end up messaging my doctors and demanding we test for more things! And this last round I tested positive for HHV-6 which is another virus in the EBV family and is found in a lot of CFS patients. So we switched my anti-viral medication to target that specific virus and now I have hope, again, that maybe this time I will beat it! Without hope I don’t think I would have survived these 15 months :-) 
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    • Posted

      Ah thank you Lisa .... yes I’ve only had some days whereby I have just crashed all day they are not everyday but when they come boy oh boy .... I’d rather be tortured ! Mostly I just lie on the bed  weak and tired and kind of come around about 2pm for a few hours. 

      I’m going to an infectious disease dr after being referred by an immunologist I’m so sick of drs too.... that in itself is exhausting . Had to get a taxi there yesterday as was too ill to drive . But will ask for more tests too. 

      I cannot believe youve gone through this for 15 months only 6 months for me and I’m literally losing it ! 

      If it was just like any other illness whereby you see light improvement each day I could handle it but it’s like groundhogs day every day ! Keep us all strong Lord this is certainly bigger than me ! 

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  • Posted

    Hi Lori,

    I'm so sorry to hear you've had such a tough week. I really do empathise as have not been on the forums so much as have hit a low period in my own circumstances and I know it's so hard to cope and deal with.

    Just wanted you to know I am still thinking about you and keeping you in my thoughts and prayers - hang in there Lori we need God and we need each other now to encourage and help each other through.

    Craig

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    • Posted

      Thank you Craig ! I’m trying to use power of mind and ‘trying ‘ not to give this thing ‘energy’ . Of course I’m exhausted ... not really getting enough sleep but getting through each lonnnnng day best I can .

      I’m sorry you are too going through such a low time .... praying for you too .. you are so supportive to everybody and deserve only the best in health ! Hoping you get through this and see some improvement soon . 

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    • Posted

      Thanks so much Lori,

      Your prayers and thoughts mean everything to me right now. I'm very grateful for your support. I know you're suffering too man, I'm still thinking about you and keeping you in prayers man. 

      My mental resilience just seems to be a bit broken at the moment - you're right man if we can get our minds thinking the right way it goes 90% of the way if not further to recovery. Hoping your sleep pattern improves man, I take amitrypyline at night which helps with sleep and pain, I would recommend it worth talking to doc anyway if finding things hard and it could be an option.

      Hang in there Lori, you have been so supportive to me and everyone too, and I believe God sees that and praying for many blessings and your healing today in Jesus' name.

      Craig

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    • Posted

      Yes I have olanzapine and Xanax but only seem to get knocked out between 9-3am wish I could sleep right through 🙄 but I guess I’ve heard it’s all part of the virus . 

      The best advice is staying calm I know it’s really hard but once our emotions get involved the problem becomes so much more magnified . 

      I hope one day this will all be a big bad nightmare that will become distant .... from a non crier and a toughie I’ve never shed so many tears .

      Hoping today is a bit better for you and you at least get a glimpse of hope .

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    • Posted

      Thanks Lori, hoping that the medication can grow to help you for the full night rather than just some of it, maybe if there is another dose that you could go to worth talking to the doc about maybe? Although I do understand as reluctant myself with lots of medication and everything, but have had to give in to that a bit recently.

      Yes keeping calm in the face of feeling so low and dealing with such hard circumstances is not easy man. I tend to feel panicked in the morning and getting up can be so tough and draining, and then I've just been happy to do small things and then rest a lot of the rest of the day, making me feel guilty and lose a bit of confidence but just don't know how else to cope at times right now. 

      I'm still thinking about you Lori, hang in there my friend. Trusting that God is there and understands where we are weak and struggling to manage or think clearly, and that He will help us - I pray that today in the name of Jesus. 

      Hoping you have a settled day Lori and thanks again for all the kind words.

      Craig

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    • Posted

      Hi Craig

      I haven't been on the forums too much lately but I have been wondering about you and how you've been going. I'm sorry to hear that you've been struggling so much lately, being in pain and feeling out of control of your body is a truly awful and powerless feeling.

      I think when things seem to grind to a halt its sometimes a sign to slow right down and just try to take each day one at a time. Also, try to really consciously do things for yourself that bring you comfort and reassurance like watching a favourite movie or calling someone you can really confide in who supports you. I think those things really go a long way in promoting healing. There's a lot to be said for self love. 

      Praying that you turn a corner with your recovery soon and that your pain is healed.

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    • Posted

      Hi KS,

      Thanks so much for taking the time to send such a kind and warm message to me. It means a lot right now as have just lost myself a bit in everything, things just got on top of me a bit and after a spell where I had been doing a bit better just feels things have come crashing down a bit. 

      Absolutely just need to take one day at a time right now, that's all I've been able to do and I still feel guilty that I've not been doing much other than being lazy really, it gets to me and has eaten away at my confidence. It has been frightening right now and I have felt just like I don't know how to just function in a normal routine even at the moment, I'm very much a person of routine and when that's knocked out or not feeling like I can do that it hits me hard - sounds silly I know!

      I'm hoping you are doing better KS, I'm always pleased to see a post from you because you have been such a warm and friendly person to chat with. I'm still thinking about you and believing you are going to get there too, and remember we must all just hang in there and support each other!! 

      Thanks for your prayers they mean a lot they really do - and praying for your full recovery and good health too. God is the great physician I still believe.

      Craig

       

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    • Posted

      Hi Craig 

      I know exactly how you feel . I love my routine and if it changes I feel very out of balance . Even going through this illness I’ve managed a new routine ... nothing exciting of course but I believe during hard times it keeps you balanced . 

      I feel like my skin is crawling the past few days and don’t feel grounded at all ... it’s a horrible feeling and my heart goes out to you .

      The mental aspect of this ‘thing ‘ is just awful sends you cuckoo . 

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    • Posted

      Hey Lori,

      You do sound like a man after my own heart! I'm definitely someone who needs structure and balance and stability, and especially at the moment when not able to keep that or find that it really hits me hard. Hoping and praying God can help us find the right kind of routine and balance that's best for us at this time Lori. 

      Really hoping that that crawling feeling settles down, I do remember that feeling well I had it a lot during the virus Lori, I think it's just the effect of the low grade fever running in your body and it makes you skin feel that way - it's an awful sensation I know and really hoping thing settle down soon. 

      Thinking about you and hoping God can help settle our hearts, minds, bodies and souls at this time. Hang in there Lori, you're going to get through this I do believe that thanks to God. It means a lot to me too when others believe that I can get through it when I'm struggling to see or believe it at times - so want you to know I absolutely believe you are going to get there with a little time and help from God.

      Craig

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