Long term consequences of Glandular Fever
Posted , 14 users are following.
I'm a twenty three year old woman. I have been sick with Glandular Fever for almost four months. All symptoms still present with no improvement, sore throat, swollen glands, fatigue and muscle pain. I got a diagnosis quickly as my best friend had Glandular Fever so I knew to ask for the blood test. While she has returned to full health (guess who infected me and made me sick due to her carelessness) I am not getting better. Unlike some people whose stories I've read, I have not been bed bound and have continued working without informing my employers of my illness. However, living with this disease has made my life a daily struggle. Anytime I'm not working I am resting in bed. I hardly ever socialize anymore and spend most my time alone. Even before I became ill, I never drank or smoked, and I ear healthy. However, I am worried about developing Chronic Fatigue or MS as I am not recovering. I am afraid in the long term I will lose my job to this disease if it becomes a chronic illness. I have been to GPs and they can't tell me how long more I'll be sick or if I'll get better. I fear that I missed my only window of recovery because I continued to work and didn't quit my job when I was originally diagnosed. I'm now facing the prospect of being sick for the rest of my life. And the thought of that makes me wish I was dead.
1 like, 142 replies
sickanon2 sickanon
Posted
Thanks again for the kind words everyone. Craig, my boyfriend is saying the same thing about the importance of me establishing a routine while I'm sick and living at home. I know there's things I should be doing , working on upskilling, creating new work for my portfolio, studying for the driver theory...but after months of working myself into the ground, I feel like I'm completely lacking in motivation to fight against my fatigue/symptoms. I know I am capable of doing...but somehow I have lost heart. Although I feel actually applying for new jobs is pointless given my health at the moment, I am feeling very intimidated when I look at job postings. I am smacked in the face by the fact that I am only out of college a year, and that the one year of work experience I have isn't enough when most jobs are looking for two years. I am torn between fretting about my health, and fretting about doing SOMETHING about my employment situation. Which is ridiculous because the one thing I'm not doing is relaxing and recovering, which I really have to do whether I like it or not...my symptoms have flared up over the last few days and I'm 100% certain that me going around in circles is at least partly responsible.
40with.gf. sickanon2
Posted
in my opinion, nothing is more important than you! Forget work(for now) concentrate on getting better, your health is everything and the only way to recover is rest and being happy and stress free. Then your health will slowly come back. if you could just let go for a while?! You can pick your career up later.
caroline x
craig07920 sickanon2
Posted
Hi Sickanon,
I totally understand where you are coming from, it's very stressful being in that situation and worrying about not doing anything. I'm feeling a bit that way with my back at the moment too. Caroline is right though your health is no.1 priority, so try not to worry about work and that will come again in time.
In terms of routine, it's okay just to set yourself small achieveable goals each day, that doesn't mean to say doing a full day of work / activity, but even if you just do one or two small things each day is positive and you can step it up when feeling better and step it back if not having such a good day. Remember key thing is not to put pressure on yourself at this time, be understanding to your circumstances your body has taken a battering and needs time to recover, and you will get back to full activity again in the fullness of time.
Craig
sickanon2 sickanon
Posted
craig07920 sickanon2
Posted
You most definitely are capable of doing productive things Sick Anon and you will again....don't be too hard on yourself remember the virus is an extremely tough thing to cope with physically and mentally....but when you start to feel a bit better (which IS happening) then you will feel more like doing things again and things will come back to you - try not to worry hard as it is I know (being a worrier myself).
Craig
sickanon2 sickanon
Posted
Thanks for the support guys. I think I need to be doing something, even if it's only one or two small tasks per day, to help keep my anxiety in check. Hope your back feels better soon Craig. For the moment I won't push myself to do a full day of work / activity, but try and tick off a few tasks each day, as you suggested.
craig07920 sickanon2
Posted
It's good to keep your mind occupied if possible Sick Anon, it's hard because when you don't feel well enough physically or mentally it just saps it out of you, but as you say even just doing something each day to take your mind off it and offer some distraction helps - make it something that you enjoy or find purposeful / worthwhile.
When I had glandular fever I wasn't able to do much and often I didn't feel like it but I still tried to meet up with friends at least once a week and tried to go out for a short walk every day. You just need to judge though what you feel up to, and don't do anything that causes you extra stress or anxiety, and don't beat yourself up if you don't get much done on any given day either - it's more than understandable.
Craig
sickanon2 sickanon
Posted
I went to the doctor this morning. It's official, I have Chronic Fatigue Syndrome. There's no hope for me. I'm not going to get better. Thank you for all your kind words. Even if it's no longer possible for me, I do hope each and every one of you makes a full recovery.
40with.gf. sickanon2
Posted
Oh sickanon, there's always hope, just remind me how long you've had this?! I heard a story of a lady not be able to move at all, she was bed bound, she had a really slow exercise programme of building up her stamina, basically telling her muscles or brain that doing a bit of excercising wasn't going to hurt her, it took her 5 years from not being able to move at all to being better..... So there's hope back from this even if it takes a bit longer. What are you able to do right now? Xx please don't let the doctor make you feel bad, I think it's a bit cruel as it's the thing we all want to hear. And I don't think it helps. Xxx Caroline.
craig07920 sickanon2
Posted
Hey Sick Anon...
I thought exactly the same as you when the doctor said to me after 6 months you're going into Chronic Fatigue Syndrome....it made me feel like I had no hope and that things wouldn't get better. It's the worst and most horrible crushing feeling in the world....I want you to know I'm thinking about you because I know you must be feeling at such a low ebb.
BUT I want to encourage you and reassure you that there IS hope.....things can still get better and I believe WILL still get FULLY better for you - it just takes different lengths of time for different people, many doctors just write people off as a CFS case if things don't improve inside 6 months or a year or whatever - however hold onto hope - God is greater than any of these doctors and he can and will heal you I believe.
It took me longer than the time you have been unwell to get better Sick Anon and it's the same for many others on here...but they still went on to make a full recovery. The virus can take such a looong time to get over but it doesn't mean you will never get over it or have to accept it as CFS as some doctors might want you to.
So please please don't give up and hang onto hope...even though I know it's faint just but even telling yourself each day out loud, even if you don't feel like it 'by Jesus stripes I'm healed', can work amazing wonders for you - just try it.
Thinking of you and I still believe you're going to get better, no matter what the doctor said.
Craig
craig07920
Posted
And want to reassure you that this can and is for many a normal course for the virus taking so long....but then it's equally normal for them still to get better after that. Plus you're young Sick Anon and your body has great powers of recovery (even though it may not feel that way right now).
Just take things one day at a time, try not to look too far ahead and remember that there is hope and you are going to get better - I believe that because it's going to happen and it's true!
Craig
40with.gf. craig07920
Posted
Sickanon, Craig is so right... Whatever your doctor wants to call it, you've contacted glandular fever and it takes a while to get better...I'm two months on further from you and I'm having better days now. Lots of better days now. Although a bit of a puffy neck today and slightly tired but not as bad as I was. So, slowly but surely! Xxx
sickanon2 sickanon
Posted
Thank you for all your kind words. To be honest, I went to the doctor hoping for some reassurance. I wasn't really expecting her to tell me that I have a chronic illness and won't ever recover. I had to fill out a questionnaire with her guidance, and I fit all the criteria. In light of that, I find it hard to believe that she's wrong. She told me to contact the Irish CFS/ME association to put me in contact with a specialist to diagnosis me officially. I just feel so devastated by the news.
craig07920 sickanon2
Posted
Hey Sick Anon,
Doctors can be so uncompassionate in these circumstances, Caroline is right really don't want to let what the doctor has said drag you down or make you feel like things can't still get better. The doctor is only going by their so-called standard guide where if they don't see recovery after a certain period of time they write it off as this CFS - in my opinion to do that anywhere near inside a year or even two years with glandular fever is totally wrong, because the vast majority of people who are ill for even that a year or more can and do still make a full recovery.
I believe you will make a fully recovery too Sick Anon....just hang in there. I suppose these is no hard contacting the CFS association or whatever, but that doesn't mean to say you won't still recover, because really truly I believe you still will - I might be insane because I'm not a medical person but I actually believe the people on this forum are more informed about how the virus can affect you than most general GP doctors.
Craig
Mono_too sickanon2
Posted
My doctor mentioned this to me a 7 months, It will be a year in late October and I have noticed improvement after my relapse in July. My daughter has noticed slight improvement in her brain fog it will be a year for her in November. How long have you been sick?Do you noticing any improvement at all? I think that the reason my daughter is having a harder time is that she has had to work the whole time. I think maybe now that you are off work things may change.
The doctors know so little about this illness, I talked to a new doctor the other day and she thinks that it is just a more virulent strain of mono/Epstein Barr that lasts longer. She had a different take than the doctor that mentioned chronic fatigue.
Do not give up hope I felt like this many days and things are finally improving.
40with.gf. Mono_too
Posted
I love to hear things like that mono, it's so true. My friends daughter has now had it 13 months, but she's back at college and has the odd day off for a sleep/bed rest. And I'm sure you will too improve sickanon, believe you will. Especially as you've given up work, don't expect too much and you can't feel too down hearted. Just do one day, don't look far ahead. Caroline xx