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I thought I would start a discussion, I have written about my experience in a few other threads but wanted to create my own in the hopes it offers people hope and comfort because in the darkest times it's what I needed.
I started to feel very unwell May 2016, back and forth to the doctors but didn't find out it was glandular fever until July. I also believe if I had of rested earlier I would maybe not have suffered so bad but because it took two months for a diagnosis I carried on working and working out, which absolutely ruined me.
I had a horrific summer swollen glands, couldn't eat, couldn't move, in agony... sure you all know. Could barely make it to the toilet I was so weak. Sent to cancer clinics because I had so many lumps in my neck, which was a scary time. Literally thought this was it. Flashbacks to the worst of it and me screaming in agony, thinking I couldn't go on and if I ever recovered I would never, ever take movement and life for granted again.
By September I was moving around the house more but I well and truly paid for it, I would be in agony, muscles would spasm and I would barley be able to move. Began to really loose hope that I would get better. As well as being ill... I lost a part of myself to it. I would see my reflection and cry because I would look terminally ill and did not recognise myself. Life was about coping minute by minute and I didn't have the energy to think past that, bed 247 with a lot of care and support from my family.
By October I was forced back to work because of my living situation. I had no choice and it took everything I had to keep it up. A few weeks in and I had a MASSIVE break down which was detrimental to my recovery and I finally admitted to work how I wasn't coping. This took a lot of anxiety away but my mood was beginning to suffer as it had been dragging on for so long I began to get depressed. Somehow I made it to the Christmas break.
After Xmas had another mini melt down because I think you put so much pressure on yourself ' I will be better by then' etc and when your not it just wrecked havoc with my anxiety.
I kept pushing through. I think the worst is it's not a smooth straight recovery it's zig zag, forwards and backwards. It goes from a good minute out of the day. To a good hour or two. Then to oh today's been manageable. And now I'm at a few days have been okay. But then the next might make you crash and remind you your not there quiet yet.
It's been the hardest nine months of my life. The GF throat and sickness disappears after a few months although I have nerve damage in my neck because of it so on medication for that. It's the fatigue, the pain and agony, just functioning destroys my body let alone get through day to day life and I have relied heavily on pain relief medication.
I kept regularly visiting my doctor which I highly recommend and he referred me to the pain clinic which helps very much so. I have also had a chronic fatigue assessment and they said although they are on the fence they believe this is still post viral fatigue and even though it 10 months on it's a very short term in grand scheme of chronic pain and fatigue.
I remember reading something on a chat room saying someone had GF and CF and what saved them was cardio and I thought are you serious. What sort of advise is that to somebody who can barley make it upstairs or down the street.
I Am a very active person which means this has made me feel even worse about myself being so immobile. Slowly loosing a piece of me to the illness and my body is changing because of the lack of exercise which I hate. But. In December. (So 7 months on) I had a thought... I'd like to go for a walk and I wonder if I could jog. Now. To someone suffering with GF to even have that thought is a MASSIVE step forward. So I went. And it was hard. And I collapsed after and everything hurt and twitched and I had to take codene to cope. But then I tried again a week later. And for 4-6 weeks I kept trying and trying. And although it hurt and I suffered terribly after for days... as each week goes by I get 1% stronger and stronger.
It is now march and I am running 3 miles, 3 x a week. I have to listen to my body and be very very mindful. But seriously. I understand now. You have to not let it control you and PUSH through it. Now, you will know if the pain you are feeling is ready for that. Because when I first read someone saying this I was like stfu, how ridiculous. But like I said, I think the first indication you are in a better place is positive thoughts about DOING something.
I am still struggling. I am still in recovery. I still don't feel 100% me and I hate photos been taken because I still don't think I look like me and I still feel like a sick person. It's been very very hard because you have to be mindful and all the services tell you to take every little thing as a positive and focus on how FAR you have come not how FAR you have to go. I find this hard. I think the best advise I could give (but have found it hard to follow myself) was to pace yourself and see every single thing as a positive. Once you start having thought of attempting to do things do it. It took me, as I said, 1-2 months for a gentle jog to not destroy me after. You just have to get to a point where you listen to your body but then ignore it's attempts to stall you too. Because CF is all about our pain receptors been damaged thanks to virus so they are constantly in fight or flight activation mode.
I am still a fair few months off a full recovery and I don't believe it will be until the summer (I hope). Doctors like to say weeks but when you talk to other people it is more like months/year. It's so hard not to be hard on yourself and loose hope and some days are manageable some you have to stay in bed and not move. I just refuse to let it turn into something bigger!!!
It's not days/ weeks but I'll say each month you get a little bit closer and a little bit closer. I think if I wasn't forced into work I'm not sure where I would be now. If I would of had a quicker recover or if I would of struggled to keep moving because I didn't have too. I think when you take that next step (work or exercise) do know it will make you feel worse. It will be very very hard but just keep pushing through and listen to your body.
I also take lots of vitamins, b12 is advised for GF I also take D3 and omega 3 and iron. All highly advised for GF / CF suffers. Healthy diet is also advised and I swear I read that dairy, wheat and red meat etc can make you worse I don't know. I also have a monthly deep tissue massage which really helps and have been advised acupuncture but have yet to try it.
As you can see, it's been a very long time for me and I'm still struggling. Make sure you have someone you can talk to and a good support network. Chase your doctor into referrals too so you can get the right support there. The biggest thing I clung on to was that the fact there is improvement. Even if it is 1% each month is a POSITIVE. Because if it had turned into chronic fatigue /ME you would see NO improvement after six months. Or decline. So hold on to that and keep going. Pacing yourself, REST. And resting before you need to rest. Learning to be mindful. It all helps. I look forward to reading from people who have fully recovered as I still have my ups and downs but determined to make it through.
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