Forum

Take care of yourselves

Hi all,

Just wanted to remind you all of the importance of taking care of ourselves when we have an immunosupressed condition and share my story.

I went back to work part time (2 days) in November after having my third baby, despite having a flu jab I caught everyone’s cold in the office as they all ‘struggled to work’ to the enjoyment of my managers, I was feeling thoroughly run down and just yuck then three weeks ago I stubbed my toenail making it bleed, it came up a little imfamed but went down again so I thought nothing of it. On 7th March I was rushed to hospital with pain in my leg, (same side as my stubbed toe), running from my groin to my toe. After three emergency operations, a 10 day stay in hospital and my family being told i’d probably have to lose my leg or my life, it turns out that my little infected toe along with my battered immune system had created a mass sceptacemia which had spread to my lymph node in my leg!!

The numbness in my legs meant I didn’t feel anything until it was almost too late!! Luckily my surgical team managed to save me and my leg buy the scars from knee to ankle are a stark reminder to take care of myself and how close I came to being just another statistic.

Not meaning this post to sound miserable or scary but if by reading this someone avoids what me and my family have just been through then I’ll be happy.

A pic of my scars or on my fb account if anyone wants to see.

Hope you all stay really well and sending you all my love

Becksie xx

you are right to look after yourself, because it has a habit of paying you back if you dont.

You said about your fellow workers being ill, when i did work I was told by one worker you are making us look bad because you struggle in and you have the chronic condition.

So on the day i did take a heavy cold I called in sick. At this the boss called HR , his boss by other boss the boss of the site and everyone and their granny. I had then to go in and explain that I took the cold like everyone else and MS didn’t make me ammune to other stuff.

But i guess because i didn’t have a habit of taking time off they thought it was serious.

But we have to look after ourselves now and we do have to keep that in mind

best wishes

trish

Hi Becksie, God what a time you’ve been through !! So glad things are getting better for you now. It’s a very sound warning to all of us to be extra cautious with ourselves. Take care xxx

Hi Becksie

Good Lord, what a time you’ve had. Something which seems so trivial causing such problems, I hope you are well now, and after reading your post, I’ll definitely take more care of my feet, so thank you, your story has made a difference for at least one person.

Take care

Min xx

Hi, that’s a good reminder about taking care of potential infections whilst numb , I’m always bruising and cutting myself without noticing , I know our immune system is suppressed whilst on D.M.D’s , but is it suppressed anyway ? ,

john

Oh Becksie,

You are so right; I was similar to you; spilt a little coffee down my leg; became infected. Hospital gave antibiotics but caught MRSA and Septicaemia; was told the only thing to do was amputate my leg just below knee.

Great but then to add a nurse put my Jay cushion on my wheelchair back to front and gained a bed sore on my backside which ended up with 4 months more in hospital to be surgically removed.

So yes the ethos of your message is so right; be careful out there people. The strange thing is though viruses do not seem to affect me as bad as a healthy person.

Hope you’re over your Annus horribilis now and am improving.

George

Hi Becksie, How scary for you and your family! I’m so glad you came out the other side! I’ll remember not to take a small injury for granted from now on! Teresa xx

Hi Becksie

I’ll definitely take heed of that tale. It must have been very scary for you. My toes are always numb until they develop callouses and/or corns and I have thought of discussing this with my nurse as I would love to see a chiropodist but unless they refer me to one on the NHS it’s just another expense. In the meantime I give myself a pedicure each week and do my best to keep my feet in reasonable shape.

My mum was very prone to sceptacemia as she was diabetic and we had to watch her like a hawk whenever she had the tiniest cut or insect bite. At least I know what the signs are …

Take care

Tracey xx

Oh love! What an awful thing to happen! My goodness indeed!

It made me cringe as I am having my toenails checked every 3 weeks, as they ingrow and get infected. Removal of the 2 big toenails has been mentioned. I really want to avoid that, as I am immobile and can`t do with any extra pain.

Your story is a stark reminder of how compromised we are when our immune system is ailing.

So glad you are on the mend now.

luv Pollx

Hi George, so did you have your leg amputated then? Pressure on top as weel. How awful for you.

Have you recovered well?

Poor you.

luv Pollx

Hi Boadicea,

Yes I did have it off; 6 days before Christmas 1998 so I can with honest say I got legless at Christmas. No problem.

George

That explains a lot…

x

Goodness Becksie!

Glad to hear you are recovering now but what a terrible thing to go through.

Thanks for posting… as you say, we have to be careful and not just assume something will heal by itself.

Take care hon,

Pat x

can i please be ignorant and ask - is it just certain medicines that leave people with supresse immune systems or do all of us with ms have this? xxx

Hi my Neuro and MS nurses have told me that as MS is an auto-immune condition, (the body fighting itself - like Rheumatoid arthritis, crohn’s and I think ME or chronic fatigue is included in this category now too), hence we do then have a tendancy to be immuno-supressed i.e our immune system takes a battering with the simplest bugs, in my case the ‘office flu bug’, meaning it took my immune system longer to recover from the first bout, thus I caught it on every time it went around the office cos I never really recovered from it (i think I was ill for about two months!!) - which is why we are advised to have a flu jab and make sure all other jabs are up-to-date.

In my case like one of the other forum user (sorry I fogert his name), I caught MRSA and Strep A which live on everyone’s bodies but they really did a number of me along with the other infection (I forget which one it was), that was raging through my immune system. I was so lucky the nurse looking after me demanded an MRI scan because he could see how ill I was with a temp of 42 so i’m told and when they saw how bad it was I had faciotomies just in time - which were left open for a week. The hospital then wouldn’t let me home until the house had been deep cleaned in case I catch something even now because they have told me my immunity is still too weak to fight off anything at all even a cold could be really nasty.

I also think that some of the side effects of the meds we take can cause our imune system to become supressed - I’d check that with your Neuro though.

Becksie xx

Hi my Neuro and MS nurses have told me that as MS is an auto-immune condition, (the body fighting itself - like Rheumatoid arthritis, crohn’s and I think ME or chronic fatigue is included in this category now too), hence we do then have a tendancy to be immuno-supressed i.e our immune system takes a battering with the simplest bugs, in my case the ‘office flu bug’, meaning it took my immune system longer to recover from the first bout, thus I caught it on every time it went around the office cos I never really recovered from it (i think I was ill for about two months!!) - which is why we are advised to have a flu jab and make sure all other jabs are up-to-date.

In my case like one of the other forum user (sorry I fogert his name), I caught MRSA and Strep A which live on everyone’s bodies but they really did a number of me along with the other infection (I forget which one it was), that was raging through my immune system. I was so lucky the nurse looking after me demanded an MRI scan because he could see how ill I was with a temp of 42 so i’m told and when they saw how bad it was I had faciotomies just in time - which were left open for a week. The hospital then wouldn’t let me home until the house had been deep cleaned in case I catch something even now because they have told me my immunity is still too weak to fight off anything at all even a cold could be really nasty.

I also think that some of the side effects of the meds we take can cause our imune system to become supressed - I’d check that with your Neuro though.

Becksie xx

Hi George

I’m so sorry for you, I was so upset when I read your post it sounded so much like my story as I caught MRSA and Strep A as well as the other bug which caused the prob in the first place - I was feeling so sorry for myself because they were so close to amputating my leg because infection had started to spread across my stomach but thank goodness they managed to get me to theatre just in time to drain it and thus save my leg - i’ve still got to be mega careful though because i’ve been warned that my already low immunity is still not going to be recovered yet :frowning:

Sending you all my love and best wishes - hope you are well now

Becksie xx

Hi George

I’m so sorry for you, I was so upset when I read your post it sounded so much like my story as I caught MRSA and Strep A as well as the other bug which caused the prob in the first place - I was feeling so sorry for myself because they were so close to amputating my leg because infection had started to spread across my stomach but thank goodness they managed to get me to theatre just in time to drain it and thus save my leg - i’ve still got to be mega careful though because i’ve been warned that my already low immunity is still not going to be recovered yet :frowning:

Sending you all my love and best wishes - hope you are well now

Becksie xx

anyone know why my posts are coming up twice now?!

thanks for both posts and both messages becksie :slight_smile: !

i’m still quite new to this so thank you for enlightening me :slight_smile:

take care xxx