We are a charity and rely on donations

Charity Number: 1117194 (England and Wales)

Registered Company: 06000961

Registered address:
Shift.ms, Platform, New Station Street, LS1 4JB, United Kingdom

London office:
Shift.ms, Somerset House, Strand, West Goods Entrance, London WC2R 1LA, United Kingdom

©2024 Shift.ms

@rachx91 

Last reply

rachx91

Relationship advice

Hi guys, I would be grateful for any advice about being in a relationship while having MS. I have been with my partner for 2 years now, and I was diagnosed 10 months into the relationship starting. He has (and still is) very supportive overall and will bend over backwards to take care for me, but it’s been a hard year as my MS has been very active, so I have been ill quite a bit. I have a big relapse which lasted about 3 moths and then went straight to completing the first course of Lemtrada (which finished a week ago on Friday) and then had caught the cold he had on the sunday, which spread to a chest infection. This is now causing another relapse on my right side of my body with weakness and pain in the arm and leg, and fatigue. It’s also put a halt to us being intimate with each other for a good couple of weeks now. Obviously I fully understand how difficult this is for him to have to deal with me being constantly ill and I have been trying to show him affection in a one sided way, but it doesn’t seem to be enough for him. Unfortunately he can’t hide his emotions at all so he goes very quiet on me and goes off by himself. I have spoken with him a few times when he does get like this and explained how his actions make me feel, which he always apologised for, but it always reoccurs when I get a relapse and unable to give him the intimacy that he really wants. I’m always left feeling so guilty and frustrated as I know how my body acts is out of my control, but it’s bringing me down so much and i really am struggling to cope with this. I could really use some advice from people who might have gone through similar situations or have any thoughts on how I can make it easier for him? Rachx91 x
4
@EdmontonAlberta
@EdmontonAlberta
 

Rachx, I do not know you or your boyfriend well enough to comment on you; so I will tell my story. Married my 1st wife when she was 27. At 28 she was diagnosed with Scleroderma. It is a nasty disease; killed her at age 32. I married her because I loved her; adored her for the rest of her life. Married my second wife when she was 40; Jos was diagnosed with Lupus a year later. I told her we were "until death do we part" yet wondered "What are the odds of marrying two women with auto-immune diseases?" To make a long story short, she refused to take the drugs offered but rather changed her diet from top to bottom. No relapses over the past 15 years. I had spine surgery 16 months ago; diagnosed with MS this January. So now the shoe is on the other foot... LOL Life is a journey & we all know the destination. Will the two of you keep each other happy along the drive?

@Stumbler
@Stumbler
 

Hi @rachx91 , having MS around in a relationship is like having an uninvited lodger that you cannot evict. The best way forward is to befriend that lodger, so that you can all find ways to live comfortably together. Relationships can occasionally be "difficult". Life has this habit of presenting dramas and crises, which will stretch the relationship. But, they can all be overcome. MS is just another one of these dramas. It will affect both of you in ways which are obvious and in ways which aren't so obvious. But, you are both having to deal with the challenges presented. Lemtrada could be a very good way of creating a really good working relationship with your "lodger". But, it takes time for both you and your lodger to become accustomed to the new terms of the relationship. It may seem like Lemtrada is a bad option, but this is early days yet. It is way too soon to make a judgement. Lemtrada is a powerful treatment, which leaves you incredibly weak and vulnerable. This cold/chest infection has taken advantage of this vulnerability and is probably causing a "pseudo-exacerbation", a temporary worsening of your MS symptoms, whilst this infection exists. So, this present situation could well be temporary. But, you do feel that you are not meeting your partner's needs. This will improve and may presently be difficult for your partner, but, he did give you the cold in the first place........... You're both struggling to cope at the moment. You don't know what to do for the best and, I can assure you that he doesn't either. He wants to make you feel better too, but probably feels powerless. He doesn't want to cause you discomfort or make you worse. I'm a bloke, so I understand the physical needs. But, just for the moment, you just need to hold onto each other. No demands, no expectations, just a long meaningful hug which will reaffirm your feelings for each other. Be open and honest with each other and you'll get through this. You'll grow stronger, both physically and emotionally. Shift.MS arranged for the production of the following video, which may help https://youtu.be/tLhutilgq8A Be strong and be patient.