Six Weeks

Hi all, an update. Going on week six now. Just returned from hospital after a four day stay (my spouse) All lab work, radiology looked good with exception of VM diagnosis. Spinal fluid cultured and nothing showed up. Of course WBC in the spinal fluid. MRI shows inflammation of the meninges. Now, she was discharged, and feeling no better. Has shown no improvement. Very very tired, lethargic, absolutely no appetite, very sensitive to the touch. Now I'm hearing " I want to die". I know she doesn't really want to, it is just a way of voicing her frustration. As I said, after six weeks I was hoping to see her getting better. Anybody have a similar course of events? Relief that the herpes virus not involved. Thanks Jergen

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  • Jergen,I felt no different but as I said......this is long haul.It really is early days in her recovery and so very hard to accept that it will take time.The feelings she is experiencing are normal and she will recover.I sat many a time crying at my GP in the surgery.I thought I would never feel well again.It is now 5 months since my diagnoses as I only now feel able to cope and function almost as before.So don't expect anything more.Talk to the help line/her doctor.

    All the best...time,rest,patience,understanding from you.It is so so difficult but I found there was nothing else I could do.If she is up to it a little stroll outdoors helped me.Lifted my mood.I am 58 and never felt that low before so I understand how she feels.It won't be forever 🌹

  • Hi Caroline, your input, along with that of others on this forum is invaluable. I can't thank you enough for taking the time to reply. It gives me a sense of relief to hear your story and that of others who have overcome this devastating disease. Tonight was a little bizarre as she threw a couple of temper tantrums which is totally our of character for her. All the best Jergen

  • Good morning Jergen, after 2 lumbar punctures, & one with complications, & after relapsing twice with VM, the Drs prescribed 500mg 1 once daily of Valacyclovir for me. Finally healing & feeling Gr8 . Incorporating yoga , other exercise & healthy diet. I would suggest this to your Spouses Dr. I'm a 61 yr old female, who takes no other meds. Kinda believe in natural healing , but I have made huge results with this med & it's almost a year now ! I will keep your family on my dailey prayers!!! 🙏

  • Hi Mdroney, the Valacyclovir is a great idea. Certainly worth a try. She is not at the stage where exercise is possible. So fatigued it is a struggle for her to get out of bed to use the toilet. I try to feed her healthy food, but she is nauseous, and it is very difficult to get her to eat. She had a couple of temper tantrums tonight, which is a first. Encouraging posts by yourself and others helps immensely. All the best, Jergen

  • Hi Jergen, I'm almost 7 months out and still have headaches. They are not debilitating, and I can go to work, but they are annoying. The tinnitus I developed also drives me nuts, but again, I'll live with it. When I was where your wife was, I had the exact same feelings. I remember crying one morning when my husband was leaving for work because I felt so awful. Six weeks is not long enough to even begin to feel normal. Please let her know that. I'd be happy to get in touch with her if you think someone who has gone through the same thing would be able to help. Just let me know!

    Lisa

  • His Lisa, thanks so much for your comments. Yes, I tell her the fight has just begun, but it has been fought and won by many brave people before her, and she will prevail as well. I would love to have her talk to you, but she is too fatigued to speak, and operating a computer is out of the question. When she is better I will definitely has her get in touch with you. Iam thrilled to her of your progress. Warm regards, Jergen

  • Hi Jergen, VM is a serious illness which takes time to recover from. 6 weeks is very early days. It took me 18 months to get on my feet and 2.5 years after VM I can still have migraine days and tiredness . For now your partner had to rest and let the brain inflammation settle and let her brain recover. Pushing the boundaries could make it worse as it did for me. Can I suggest the following things that helped me:

    Drink green smoothies made from spinach, kale, ginger , Apple, lemon juice.

    Drink a mix of Virgin coconut oil , turmeric and honey .. Very good for brain inflammation .

    Keep going with the above as they will help her to feel better ,

    I had acupuncture which really helped to raise my energy levels and feel better.

    I had to find a level of patience I never knew I had.

    So ensure she rests and rests her brain so limit stimulation for now and be aware that the brain needs to recover, the meninges need to de- inflame and she needs to recover from a hefty virus so it can only take time.

    Take care xx

  • Hi Kitty, I'm just back from the store and purchased the items you suggested. Getting her to eat is a major problem, and hopefully she will take to the drinks you mentioned. Tonight she had a terrible bout of diarrhea, and a couple of temper tantrums, both of which are new. I will follow your recommendations, and am sure she will make a full recovery. Again, thank you and all others on this forum who have taken the time share their experiences with me. With affection, Jergen

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