Hi
Not sure where to start but was diagnosed with ms in March started Octavus infusion and I’m having another relapse a mth before my next infusion.i feel like all I do is moan and seek advice and comfort and I’m draining people but I really don’t know how to handle this
Hi Sarah, sorry you are feeling rough.
Moaning and seeking advice, sharing both good and bad stuff is what this place is all about.
I hope things are better for you soon.
Mick
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Hi Sarah I was diagnosed in May and I too am on Ocravus. Can I ask how you know its a relapse? I thought I was having one recently but the MS nurse said that it was just my bodies way of telling me I’d done too much. I am now obsessed with learning about all things MS related but especially relapses and fatigue. I am doing the fatigue course on this website. It does seem more likely that what I experienced was short circuit fatigue. - it wasn’t a new symptom and it didn’t last 24hours or more. Anyway I hope you can speak to your MS nurse and I hope your next infusion goes well.
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This might help with your research.
Case study: am I having a relapse? - by Gavin Giovannoni (substack.com)
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Hi Sarah
First of all, stop apologising for yourself!
You never asked to get MS, you didn’t get it because of your lifestyle. Unlike ill health due to drugs, smoking, alcohol, obesity, lack of exercise etc, MS is not self-inflicted. You’re just extremely unlucky to be one of the one-in-450 people in the UK who have MS. Not your fault!
Concentrate on the things you CAN do. I have given up mowing the lawn, gardening, vacuuming the house and a few other less-repetitive chores, so those things have to be done by others now. I’m trying to get the kids to pull their weight with varying degrees of success but it’s not right for my shortfall to land on my wife. I do more stuff that can be done sitting down, such as veg prep, household accounts.
In other words, try renegotiating your arrangements with people around you to better fit your new (& changing) circumstances. Stay positive!
Graeme
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Hi
I was told it’s another relapse as I have new symptoms that had lasted over 24hrs (a week) my mobility really declined too.Just finished another course of steroids and have to see my consultant in 4 weeks.how are you doing on Octavus?
Sarah
I like it but I’ve only had one dose so I don’t know if its doing any good yet. Take care 
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renegotiating arrangements makes so much sense, I try to work within my limitations but this can be frustrating. One benefit of my forced retirement is, I now have hours in which to prepare a “45 minute” meal for my wife who is doing loads of work and all the earning (apart from my little pension) I would give an awful lot to be able to help out properly in the garden, but sometimes just being there sat on my rollator chatting is as good as it gets.
Mick
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Hi Graeme
I have tried this but it’s so hard as no one around me understands me and I really feel like my health gets on peoples nerves and when I talk about how I’m feeling I feel they sick of hearing it but it’s so hard cause I’m living with it and feel so alone I told my partner that I felt like I didn’t want to be here cause I’m finding it so hard to live with the pain and fatigue and I was just told not to be silly she didn’t want to hear it.shut me down so just feel so alone.I have always been the strong independent one that takes on anything with ease and problem solves and runs the home and now I fail hoovering downstairs cause I’m so tired.I’m trying to find a group to attend so I can be around people that will understand my thoughts and ms Thankyou so much for replying
Sarah
Hi Sarah
It’s going to sound repetitive, but STOP APOLOGISING!! You’re still doing it, in your reply.
Maybe your partner and others are being lazy and inconsiderate, or just ostriches with their heads in the sand. Keep telling them until they believe it, and that your MS is not going away. Get them to read booklets (MS Society & MS Trust both do booklets abo9ut telling friends & family about your MS) if they won’t believe it from you directly. Sure, it affects them too and that’s mighty inconvenient, but if they’re on board for the duration, they’ll adapt. Eventually…
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Thankyou Graeme
They have looked at the stuff online but it’s like it’s gone out of there heads cause at the start everyone was fantastic (joys of an invisible disease)Im praying they see what these relapses actually do to me and see the changes in me are out of my control.I determined to come to terms with this ms myself but every-time I get 1 step ahead I get pulled 5 back with it.I hope your doing ok.How are you ?
You are NOT tired, you are dealing with a known MS symptom of fatigue. It can be an absolute ba$tard (git if you prefer) It is a total game changer. The person who told you not to be silly should try hoovering after running a marathon. People (myself included) have no idea how it feels until they suffer it, so you either have to be very blunt in your explanation or get them to exercise to the point of collapse before telling them they are silly if they can not then do the hoovering. When I eventually managed to explain what I was feeling when fatigued we gave it a special name, so that when I use that term (in my case “banjaxed” ) my family will understand and cut me some slack.
Wishing you and your family all the best.
Mick
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