Introduction
Hi All,
I am writing on here for the first time, I have RRMS and was diagnosed back in 2012. Since diagnoses I now have 2 young children, I always worried this would be a problem however my amazing nurse at the time discussed options. Meds’ were changed to Plegridy instead of Pregabalin whilst trying then stopped whilst pregnant. Amazed how all symptoms subsided whilst pregnant. 6 years later I now am trying to be the best mum I can possibly be however when feeling fatigued this is a great struggle and almost feel guilty when I am resting my eyes, at times I have fallen asleep and kids have had to wake me.
I have had two infusions that started in 2017 a year apart with Alumtuzemab, latest MRI this year shows that no further lesions have appeared which is a huge relief however I am still left having to take 300mg of Pregabalin Am and Pm for pain in upper limbs with 60mg Duloxetine Am and 30mg Pm to support feelings of anxiety and low mood/depression.
I guess I have decided to reach out for support as for all my OH has been through my journey with me, I just don’t feel he fully understands how I feel living with this condition and during difficult times together my condition and the effects have been used against me. He has told me that if we were to split up I wouldn’t be able too look after the kids at night due to the meds and unable to wake up if they needed me. I have tried to argue this however feel unable to convince him and change his decision. He has also called me horrible names relating to my struggle to understand and remember things and also used this against to to his advantage during arguments. I sometimes do feel that I would rather be single than in a relationship but worry about the end results i.e breaking up my family home and the fight to having full custody of my children.
Please, if people out there read this and can relate to my problems can you please reach out and offer me some advise or even just friendly support, I would be very much grateful. Feeling very confused and worried about my future at present.😢
Hello @missms25, welcome to Shift. So sorry you are going through all of this. There have been several posts recently relating to relationships, and the struggle we all have to get others to feel life through our MS experiences. You say that when things get bad, things get worse with your partner. That implies that your problems aren’t all the time, which is positive. Is there any way you could access couples therapy? That said, it would be a good idea to get some sort of legal advice, maybe through Citizens Advice? When you have these times of doubt, it would be useful to know what support you would get in the event of a separation. The MS Society might also be a good starting point with advice. You’ve done great to get through diagnosis and be blessed by two little ones. It’s complicated for as there are several strands of worry for you to endure, and it’s easy to feel that you are sinking. The good thing is that you have identified this and aren’t burying your head. Is there a trusted person you both know who your partner will listen to? It sounds to me like you are a lovely, intuitive person and a great mum who has an immense amount to deal with. It’s never a sign of weakness to ask for help and support, but I guess it has to start with open communication with your partner, if he’s up for it. Stay strong, things will work out for sure. Be true to yourself and your instincts xx
There are so many wise words here. I know what you mean about thinking that it might be easier to go it alone. I live on my own and don't have to consider other people nearly as much as if I were married. However, that is only one side of the picture and if there is another way to keep the status quo, that surely has to be a better option. Reading your post, it sounds as if the issue is to do with symptoms getting in the way of normality. My suggestion is that you take a closer look at all this. Exactly what goes on? Is it general worsening of cognition? Is it sparked off by stress? What are your routines and could they be modified? I'm wondering if your general low mood is leaving you less able to make adjustments and avoid pitfalls. My own experience is that depression makes you prone to poor decision-making and an inability to find the correct perspective in any situation. Add to that a bout of anxiety and you get a spiralling of the problem. My life has been greatly improved by antidepressants but as you're already taking them I suspect you need more intervention - maybe cognitive behaviour therapy and/or a change in meds. I suggest keeping a symptoms/feelings diary for a week then requesting a meet-up with your MS nurse, or failing that your GP. I remember my own doctor telling me that ALL patients with a long-term condition suffer a change in mental state. We're no different! Keep us in the loop, tell us what's going on and meanwhile, big hugs across the ether.xx