Couple living with disabling illnesses

Is there anyone one out there who's partner also suffers an illness?

I suffer complex regional pain syndrome in the right hand/arm/shoulder my left hand has started stiffness and swelling aswel but nowhere as bad as my right. My partner has Primary Progressive MS and it has affected his legs badly he is currently in a wheelchair with very little movement in his legs.

I was wondering if anyone is in similar situation as me and how do you cope? I feel I put my partner at extremely high risk daily. I feel like I never have time to recover after a flare up as I am on auto pilot all the time and simply do not have 1 minute to myself to recover. I feel utter depressed and do not know where to turn. The fatigue is a huge thing but I think simply because my body never recovers. My family are very much hands on but my partner's are nowhere to be see although they all stay so very very close. Its extremely frustrating.

I have just had a 3day flare up and feel so weak, fatigue, emotional ready 2 give up really. I am usually a very positive person but there is no positives that come out of this situation ever. Just seems to get worse and worse and worse.

Any advice would be very much appreciated. Thank-you in advance.

Leanne

[Kitten50]

Hi leanneI can write from the opposite side to you, I'm the one with the debilitating chronic illnesses and my partner does all he can to help and make my life as comfortable as possible, but yes he also has illness, he has battled mental illness for many years, he has a IBD which flares more with stress, he also has a hernia giving him discomfort and pain.

I feel so guilty that I cannot help and care for him in the same way as he does for me. We don't get help from families as they just don't understand the illnesses we suffer, therefore we have to muddle through together and take each day as it comes.

I hope you can build up your strength again will be feeling more positive soon x

[koffeekat99]

Hi LeanneSorry to hear you are both facing this.

Have you got any support from your health teams, e.g. specialist nurse? Have you had an assessment to see what additional support is needed or can be provided? Have you spoken to local carers charity to see what suport is available to you? Or could your family members do these things for you?

I ask as I was supporting someone in a similar position to you for several years. We noticed that it was very important for them to be able to spend time apart from each other so they could both take a break. So care needed to be in place for each of them in different ways.

It was a similar situation where one side of the family were hands on helping every day either with practical support or sorting out things, but the other side of the family refused to get involved. It did get frustrating but it’s difficult to change people.

If you can get one thing in place first please try to make it arrangements for you to have time for yourself, e.g family member sit with your partner for a couple of days, care assessment to include carer to sit with your partner.

X

[MumblingMowgli]

I find that if I stick to a solid routine flare ups are less. During a flare up I do less, but still do the most important things that need doing. Could you set yourself a routine to keep on top of the day to day stuff and then have a flare up routine, where you do only the essentials so you dont get overwhelmed. Are there things your partner could do to help? I understand MS will make alot of things more difficult but if he could say peel and chop the veg for dinner this may help your hands recover quicker. I wear compression gloves (daytime) and wrist splint (night) when my hands get bad, I also find icing them helps. I have CRPS in my leg and I have to keep that warm or I can go into a flare that lasts weeks. I use the curaaheat feet heat packs inside a loose knee support to keep my knee area warm (the worst area) maybe you could try something similar with your wrists/hands.