Hi, everyone I have been having a bad time lately with terrible fatigue, brain fog and very low mood/anxiety. Back story in the last year gave birth to my second child a beautiful baby girl and in last few weeks I returned to work (which I was looking forward to, love my job) on a phased return after 2.5 days being back at work i just totally bombed ( hadn’t been feeling great for a few weeks but thought getting back to work wud be a good change) and could not function to the point i cancelled my little girls birthday tea on the morning of the party. Never in my life have i been soo bad that i could not go on.
I have then had to go off work which i am so ashamed of and been in contact with my MS nurse and Doctor who by the way have been great and got in contact with my neurologist and I seen him yesterday.
Traveled 50miles each way for the total of I wud say 10mins if even to be told my strength tests were fine and was there anything else wrong with me but the fatigue, brain fog and low mood (as if I needed more problems). To which I said in tears “No” and was told I needed an MRI to see if anything was going on. I feel as if I am not being believed and how bad I feel and the MRI is his way to prove if there is a problem?
I am feeling soo low and out of control of everything for the first time in the 7 years I have been diagnosed. I asked if there was anything I could do or they could give me to help and was told he wouldn’t do anything until the scan was done. I feel like I am drowning and no one will help.
Sorry for all the moaning but I feel so alone and no one understand how I feel. Has anyone got any advice on how to help my fatigue and brain fog or any treatment you have been given which has helped?
I sympathise, Bean. Fatigue is the most intrusive part of my MS life. It must be so hard for you with a baby too, because the littl’uns don’t understand or give you any relief, they only know how to demand
I need loads of sleep these days. Used to need 6 hours a night, now over 10 hours during day & night. Are you the same? Just have to pace yourself and take breaks when you can rather than wait to be exhausted and crash almost involuntarily. Rushing around doing one chore after another is no longer an option - you might have to choose which chore to do before your next rest, and so on.
If you’re in touch with your MS Doc & Nurses, I presume they are on top of your diet, supplements, bloods etc? Magnesium, Cod liver oil, Co-enzyme Q10 usually get mentioned, along with Vitamin D high dose. On blood tests they might pick up things like low potassium, calcium, lipids as some drugs can wash certain compunds out of your system and hence they can recommend supplements. Unfortunately there isn’t a miracle cure for MS fatigue.
Most of all there is the game in your head. We have to accept our condition without giving up. We have to be robust with others who outwardly don’t understand the difference between fatigue and slacking. Stop apologising for feeling crap - an apology sounds like you’ve got something to hide. Not fair is it? Tell people, including yourself, that your currrent condition is how life is and it might not improve. The conversation with your employer will change from “when can you get back to normal?” to “what are you still able to do?”. It’s depressing to have to think that way but at least you can have a constructive conversation about managing their expectations of you.
I’m sorry I can’t offer a way out, but we all must all strive to be the best we can possibly be: most of all for ourselves and then for the people closest to us, in that order.
Graeme.
Thanks for your reply Graeme, I am on B12 injections as I dont absorb it anymore and I take vitamin D, folate and vitamin C. I think I will look into others to see if it helps.
I dont sleep as much as 10 hours be lucky if I get 6 to 7 at the mo as I am waking in the night with night sweats and the broken sleep is not good. Not sure if this is an MS thing or something else I feel I am falling apart.
I am finding it hard mentally to deal with the fact I can’t do what i normally would and feel like i am failing in my family life and work life. Dont know if I will ever really come to terms with it as it’s a new blow everytime I have a relapse and it’s hard to keep climbing that mountain every time only time will tell.
Thanks
Dealing with a baby is hard. Having to adapt to going back to work after being off, but particularly leaving a new baby behind, is hard. Having MS is hard. Cut yourself some slack. You’re dealing with the trifecta right now, and sadly, it’s not a race you’re going to win. Be happy if everything winds up tied for third place.
Do you have family to lean on? Someone in the house other than you and the baby? You need a support system – people to help out physically, financially, emotionally.
It is possible that you’re dealing with a relapse now, hence the need for an MRI, and it’s also possible that you’re just having the natural exhaustion that comes from all these new changes on top of MS.
Rest as much as you can, even if you’re not sleeping. Lay down when the baby naps. Stop fussing about the housework. A little dust and cobwebs never hurt anybody, and if your neighbors don’t like it, hand them a broom. Find as many shortcuts as you can. Stop cooking elaborate meals and do one-pan casseroles or just heat something in the microwave. Have a “home” wardrobe and an “away” one so that you don’t have to do laundry as often. If there are other adults or older children in the house, get their help with everything.
You are not failing. You’ve been handed a situation you never asked for and you’re doing the best that you can. That’s all that anyone should expect of you. Tell the guilt to take a hike and start patting yourself on the back for the little things that you accomplish.
what a beautiful thoughtful post. I was going to say a lot of the same. @Bean picture this. Normal life (if there is such a thing), no MS.
2 young children and a job. Do you think you would feel great? No you would probably be on net mums asking everyone how they cope with 2 young children and a job.
THEN FACTOR IN YOU HAVE MS.
How DO you think you would feel, well yeh EXHAUSTED. even more so. I have met mums who dont have MS who are so worn out they dont even know what time of day it is lol. Low mood and emotional have you spoken to your health visitor about possibley have PND?
i WOULD you could have that all the above may have nothing to do with your MS. When you have a baby as you know your hormones go on a riot.
You obviously have a partner i am hoping your family are helping you right now too. Get someone to have the children for you for a long weekend and just chill out.
What you are experiences is normal dont be so hard on yourself. Jeez 2 young children, MS and a JOB you should have a medal IMHO.
Your AMAZING. Now dont be so hard on yourself, have a nice relaxing soak and do things just for YOU. Hair, nails, pamper ok. xxxxx bless you
Great posts there from Norasmom and Crazy_Chick. We all support you in your plight, Bean, as we all have our own battles to fight and face similar challenges in our own lives and circumstances.
Unfortunately all we can really offer is tough love though
To repeat Norasmom’s words “You are not failing. You’ve been handed a situation you never asked for and you’re doing the best that you can”. Your situation is not ordinary, it is extraordinary and you must accept that you will need extra help.
All the time you cope, and you keep on delivering “normal”, those around you will LET YOU. They would only really have to face your frailty once you’ve gone over the edge. Your own self-respect and sense of duty is powering you forward but exhausting ever-faster your reserves. Your partner, family & friends need to be clued in and then they will need to buy-in to a new regime. It’s a terrible thing to contemplate but us MS-ers are on a downward flight-path, albeit each one of us on a different rate of descent. Things you can do today you will be less able to do in future years etc.
Rather than flogging yourself to death with firstly the physical effort and secondly with the guilt & worry that you’re somehow failing those around you, you need to engage with your loved ones and ask them to help YOU and in particular, take a bigger role in looking after your kids. By supporting you, they will be helping you to continue doing what you do, but with a safety net as well. And though you may have never used it in the past, the benefits system is surprisingly good at supporting those in need of a bit of extra help.
Fatigue is a misery. All the above posts are right. You cannot ‘fight’ fatigue. You basically have to admit defeat and let it be the boss. This means rest when you can. Snooze when the baby does. Take an hours nap when it’s possible. And as already said, having a tidy house is not worth the extra fatigue.
There are things you can do for fatigue. Learning to manage it is key. Have a look at Fatigue | MS Trust There are some key points to take from this webpage.
Also, you could ask your neurologist for some drugs to help. There are two different medications. The best is Modafinil. Unfortunately, it’s not always being prescribed these days. Some neuros are still giving it to people. If you can’t get Modafinil, or find that you dislike it, try Amantadine. It’s not quite as good, but it will give you a bit more resilience.
Keep in your mind though that fatigue is something like a bank balance. You basically have only so much energy (= money in the bank). When you’ve used all the energy (= spent all the dosh), then you’ll go overdrawn. You can’t ‘push through’ fatigue. Much as you can’t knit yourself some more money. When it’s gone, you have to actively (ie giving up on the action) rest to get a bit more energy (= spend no more £ until payday). If this makes sense to you, you’ll be halfway to winning the fight with fatigue (by accepting that there is no way you can win!
Modafinil helped me to stay in work as long as I did, I think. It was popular for MS fatigue years ago, but seems to have gone of of fashion, which is a pity, as there isn’t anything any good to replace it, as far as I know. I have a dim notion that NICE decided it wasn’t any good, which goes to show that NICE forgot to ask me! I stopped it in the end because once I was on Tysabri, my fatigue improved as the general background MS activity was damped down. So my other suggestion is, get on the best DMD that your MS justifies because that can help. But is has to be said that the pace of my life is much gentler and quieter now that I’m retired and old, so that might be at play too.
There’s no getting away from it: MS is no friend of the busy person in the prime of life. I am sorry that you’re struggling.
The twelve spoons thing was the brainchild of someone describing their fatigue.
Then idea is that at the beginning of each day you have 12 spoons and every bit of effort you take on a different activity costs you one spoon. Once all your spoons are gone, that it - game over for the day. So you have to ration them. Getting up and dressed is one spoon (a shower would probably be another). Feeding breakfast to your children would be another. Doing washing at least another one (tumble drying is less effortful than hanging it out to dry), etc, etc.
I likeu that analogy, but think the problem is that for most of us one whole spoon isn’t required to toast a slice of bread, make coffee from a one pod machine and eat it. There are no half spoons. Equally, some tasks might be more like two and a half spoons, eg shopping (I think, I don’t go shopping anymore!).
Which is why my bank balance thing works for me. I can go overdrawn if absolutely necessary. Or save some energy up for a special occasion (by doing sod all for the days before say a nice lunch out). Tasks can take much less effort than say a spoons worth (like reading, unless I’m really overdrawn by not sleeping the night before). There are even some things that give a positive lift to the balance. For example playing with kittens !
Thank you everyone that has replied, it’s a relief to speak to people who actually know and understand how I feel and how this terrible illness weighs me down. Even though I may not like to hear the truth of having to slow down I think I have known for a long time but I still find it very hard to swallow and it will take time.
My husband tries his best to understand but I think it’s hard for him. He is very good and does the shopping for me and has done since I was pregnant as he didn’t want me going out pregnant in a pandemic (I think he like to buy treats ). He also helps where he can and I am very lucky to have him.
I am hoping to get an appointment in the next week or 2 for an MRI and then get some answers either relapse or just life with MS. I think I am to see the neurologist in 6 weeks time and I will keep in mind info on meds for fatigue if I am no better. I really hope it starts to lift.
In the mean time my eldest birthday is next week and we have planned a tea party and my whole family is helping me (I normally make everything myself from scratch) I now only have the cake to worry about. He was so upset when I cancelled his sisters 1st birthday that this has to go ahead. I have baked all his cakes and have planned a simple one I can do in stages over a couple of days so I hope I can do it.
I stopped it in the end because once I was on Tysabri, my fatigue improved as the general background MS activity was damped down. So my other suggestion is, get on the best DMD that your MS justifies because that can help. But is has to be said that the pace of my life is much gentler and quieter now that I’m retired and old, so that might be at play too.
Sad to say 
!
). He also helps where he can and I am very lucky to have him.