Advocating for my own Recovery

[menchild]

It is now 15 months since I contracted Pneumococcal Bacterial Meningitis and Septicemia. I had no idea how devastating the effects of this infection would be. I really want to share you with you all what has helped me the most. I believe GP's are not trained in the long term effects of this disease and so I can't blame them. I had to learn about it myself and this group has been such an enormous help and support in my recovery. I cannot thank you all enough, you were my lifeline in the early days. I do believe that everyone who has contracted this illness should ask for a blood test to assess all their vitamin levels and Iron levels. GP's never did follow up blood tests until I asked! Mine revealed a very low iron which I have never ever had in my life. In fact my iron levels went down overnight after contracting the BM. My GP is still telling me we need to do further tests to find out why I get fatigued. I tell her it has improved and it is a side effect of the Meningitis! She doesn't listen and dismisses me! Right now I have finally got my iron levels back up to normal and that has made all the difference. Also Vit D3. These two contribute to headaches if they are too low! Right now I am doing so much better and feel well almost 'normal' if there could ever be such a thing! I still get an occasional headache and now immediately take paracetamol for that which usually works, as well as SLOWING RIGHT DOWN. Stress of any kind is a trigger. I have reduced as much stress in my life as possible in a crazy world! I am fully aware that my immune system has been working overtime and so I am vulnerable and I must be mindful of that. I am grateful for my immune system in working so hard to help me. I had to learn to be much kinder and gentler with myself. I have had to learn to stop looking after others and put myself first (still learning this one!). My headaches tell me immediately when I am overdoing it and that includes listening too long to negative/whining people who would suck the lifeblood out of me if I let them. My headaches have become a barometer of when I am doing too much or giving too much. REST REST REST ohhhh and MORE REST has been the hardest thing to do, yet when I surrendered to this, it has been the greatest healing modality of all for this illness. In the beginning I had a few cranio-sacral massage treatments and that helped calm my nervous system down and allow some healing to take place. Later on I had several Bowen therapy sessions and they also helped my headaches A LOT! So grateful for those treatments. Then I began seeing a homeopath and am now taking deep acting constitutional treatment. This is also making a big difference. It is a holistic healing modality and acts on the whole system - mind, body, emotions, spirit. For me that's when I began to see how I needed to let go of all the unhealthy people in my life who pull on my energy. I need that energy to heal. That was a big lesson to learn for someone who is a caring, giving, community/human health service worker! Yet, what has been revealed to me is that I am caring and giving from a much healthier empowering place in my Heart. I have learned to say that word NO to anything and I mean anything that does not feel like an intuitive 'YES' in my heart. Even family events! I MUST place myself first if I am to heal. I have also had to grieve all the losses that Meningitis brought with it. The emotional release has been so cathartic. It was hard to get in touch with that until I owned it. I think I was too scared to cry as that would make headaches worse! Yet not crying gave me headaches! Today I am grateful for the healing of not just my body, but my mind, emotions and spirit. I feel blessed, more at peace than I have ever been. Thank you all from the bottom of my Heart. <3

[Emerald8888]

Lovely <3 xx

[Allium11]

It is wonderful to hear how well you are doing - thank you for sharing 🙏

[Quiltergirl]

Thank you. We all need to be our own advocates. I think we all have a different paths, it is helpful to hear what works for others. Now Covid-19 has kind usurped our recovery journey. I'm hoping that now the medical community is aware of "long Covid-19 " that they will also recognize " long meningitis "! My memory and Arachnoiditis continue to be my problems 2 years post. I was just getting moved for ICU to step down neuro unit 2 years ago today. I need to remember that to appreciate more where I am today.

[Bellesmom12]

Glad you are doing well. I am coming up on my 2 year anniversary of having meningitis. What a ride. Still seeing slight improvements, but still having some continuing after effects...dizziness, short temper at times, exhaustion...but here I am. I still get mad sometimes, but overall I am just grateful I am well enough to keep going.

[menchild in reply to Bellesmom12]

Thank you 🙏 for sharing. Glad you are well enough to keep going. I can only live one moment at a time and be gentle with myself. My inner hard taskmaster has been laid to rest! Xo