Nephrotic Syndrome

As I scroll through the many #Dysautonomia groups i’m in, I notice a recurring thing.. Quotes, concerns and just venting about relationships, self esteem, sex. So many of us go though relationship break ups, marriages, fertility issues, hard decisions regarding dating, or just to have children. We all look to each other for support and guidance. However, i’m noticing a distinct lack of community for these topics, and it’s disheartening.

Lets really delve into this. Being chronically ill, we deal may deal with fatigue, wheelchair use, mobility aids, allodynia, hair loss; many others things that affect our self esteem. We may have had horrible dates, or our partners leave us. Guess what? It’s their loss! You’re a warrior, you’re stronger than you think! Most importantly, you are NOT alone. We’ve all been there.

I’ve struggled with self esteem issues for years, i’m not ashamed to admit that. I struggle to like my body, weight or smile. I’ve struggled to see what others see. In the last year, through counseling and the amazing support of my family, I’m starting to see what others do. I used to worry I wasn’t skinny enough, or pretty enough for some. I always felt I had to overcompensate for it. I hated dating, and the inevitable questions like: “Do you work out?”; “Do You work?”, or my personal favorite “So you’re just reid all the time?Like you sleep all day? That must be nice.” No, no it’s not nice to be so bone tired all the time! It’s not nice to take a shower and then feel like you need to nap!

Dating was #Anxiety ridden hell at times. You know what though? I had faith that at some point, it’d be worth it. That there is someone out there that was willing to be my cheerleader, rock and partner through all this. It didn’t happen overnight for that realization to come to me, it took a while. That shift in outlook isn’t overnight. It takes time. Time to realize that you, my darling reader ARE worth it. You deserve all the happiness. Your health doesn’t make you worth less!

Sex… yes sex.. We can all chuckle at that for a minute! With our lack of energy, self esteem, and health greatly affects our sex life. Let’s not hide, or not discuss it. We need to discuss it. We are all adults here (at least I hope everyone is). We want to feel that intimacy with our partners, the desire. Though, I can guarantee you, that there’s times you feel it’s a chore. No! Don’t think that. This is a way to increase intimacy snd strengthen your bond with your partner. It’s important to find ways to do this. Difference positions, are important. Communication is key. Communication is vital in a relationship. We’ve all felt less desirable at some point due to our health, don’t hide it. I’m a firm believer, though I know not everyone is, that sex is important in a relationship and maintaining intimacy. Communicate this with your partner, more importantly, listen to them. Adjustments, trial and error are vital in finding what works best for you as a couple!

Kids.. some want them, some don’t. I have a son. I’ve always wanted one more. Learning that your illness is so debilitating, that having a child would be difficult is heartbreaking. I’ve been there. Some choose not to have a child due to their health, some choose to try for one. Some experience heartbreaking fertility issues. It’s not easy. These aren’t easy decisions to make, easy things to experience. I’ve had 6 laparoscopies for #Endometriosis. One oophorectomy-right side. 4 cardiac ablations,. I have mobility issues, GP, POTS, OI, endo, IST/SVT, migraines, #Fibromyalgia, neuropathy, EDS and #NephroticSyndrome. I’ve spent the last year with my doctors, discussing everything about a pregnancy, the what ifs, plans, good, bad and ugly. I’ve been told brutal truth, to where i cried. I was in therapy to help in the event I made the decision not to have another child. I was in therapy to process my emotions. To process feeling like a failure as both a woman, and future wife.

I’ve wondered, and cried thinking about m son having a disabled mom. There’s times i’m upset that I’m not a soccer mom, but honestly I still feel blessed and happy to have him. I know my limitations, and I do what I can. We have a very open communication with him about my health. He loves our movie days. He actually pushes me to use my walker or wheelchair more. Though I know some wouldn’t agree, but I think my son growing up as he is, is learning to be more compassionate, caring, empathetic and understanding. He has a heart of gold, and is such a helper. As much as I struggle, I wouldn’t trade it for the world.

I know i’ve made comments about feeling fat, or ugly. My fiancé hates when I put myself down. The self deprecating comments, we’ve all said them. We’ve all dealt with all these issues at some point in time. We feel there’s no one to talk to about all this. That no one understands,. You’re wrong. There’s so many just waiting on a community to forge this support! There’s men, and women that struggle. This isn’t just a woman problem. We’ve all struggled. Living with an illness that affects us so much, that has us disabled, or not, we all experience these issues. It’s up to us to build that comity with each other. I see on facebook, people tearing each other down. That’s unacceptable. Be the light! We, as a community should be lifting each other up, not tearing each other down.

Personally, I absolutely refuse to let dysautonomia destroy my goals, hopes and dreams. I won’t let it control me, I won’t let it rob me any more than it has.

Hi all, had a really crappy day, my chronic disease is flaring back up so I’m gonna have to do more not so fun stuff to try and make it go away. Not only that but my anxiety when through the roof when I got cussed out outside of my apartment so I had a panic attack and had to take rescue medication. I’m new to this all and I’m just frustrated and feel alone. I don’t know. Any advice for a more positive attitude would be appreciated.
#Anxiety #Depression #BorderlinePersonalityDisorder #NephroticSyndrome #ChronicIllness

Relationships are hard at the best of times. It’s normal to fret as a teenager about who you are going to end up with and whether you are doomed to be eternally single. It’s a right of passage to watch Bridge Jones and accept that you will also end up doing shots of vodka and wailing along to ‘all by myself.’ Well, now add into the equation that you have a #ChronicIllness, you are covered in scars, you have to pee in a pot you keep in the bathroom and you have to pop pills constantly. In this Tinder whirlwind of an existence it’s hard enough to find a person ready to commit; let alone ready to commit to constant hospital appointments, possible fertility issues and, the worry of what’s to come for you next.

I for one was convinced I was destined for the spinster life. After all I think I’m hilarious and in the immortal words of the ‘Angus, thongs and perfect snogging’ books: ‘boys don’t like girls for being funny.’ I mean I was convinced of this way before I got ill, at 17 I was single but at least I was funny.

For me the world worked in a very mysterious way, I went into hospital and came out with a diagnosis of #NephroticSyndrome and a boyfriend. My best friend had rushed me into hospital (yes I had fancied him for ages.) It took the awkwardness of the first nurse we met to ask if he was a friend or boyfriend to confirm that we were actually together. 6 years later we have been to hell and back with nephrotic syndrome and many other things, but we have just bought a house and are attempting to be adults.

Anyway,  I’m not here to bore you with my personal life but it is all relevant to the point I’m trying to make. I want to talk about the difficulties of relationships when your fighting your own illness and why you shouldn’t feel like you need anyone either. While I’m super lucky to be with someone who has lived with me through this entire nephrotic rollercoster I know this isn’t the way for everyone.

I think what I struggled with the most is feeling selfish all the time. I don’t know about anyone else but living with someone makes you feel like you need to do your equal share if not you being the most awful girlfriend alive. This hit me the hardest when I was struggling with fatigue after my rutiximab; My partner did everything for me, drove me everywhere, cooked for me, just gave me a kiss and accepted I was going to be asleep at 7pm. For most people though, that much of a change in the dynamics of your relationship would be hard, especially in the early days or your teenage years. If you need looking after then don’t let anybody make you feel like a burden. You cannot get better if you are worrying about pleasing someone else.

Right, let’s get to the nitty gritty of it. When we are looking to go out with people we all worry about what we look like. Especially now we have a minefield of instagrams, filters and photoshop. Here we all our thinking OMG we have scars. Trust me, I don’t look like the bronzed, toned girl on the internet, because of this illness my legs look like corned beef (for American readers, that’s an English meat that comes in a can, google it, I’m telling the truth!) Other friends with this disease have #Transplant scars and things like that, it’s bound to make us all feel a bit self conscious when we want to look our best. Getting naked is no ones favourite pass time, let alone when you’ve got extra body hang ups to think about. My body is waging war on itself, It is going to look different.Again, if someone is put off by your scars in spite of knowing what a fighter you are then they are not worth your time!

The biggest challenge for me in my relationship was the side effects of #Infertility with some of my treatments. We have all heard this whatever gender we are and we all just have to hope that it doesn’t effect us in that way. I was nearly 18 when I had cyclophosphamide and was told there was a possibility I could be infertile. My relationship was only 7 months old and I had to tell boyfriend the news. We were far to young to even consider things like that, but because of nephrotic syndrome the big questions of your relationship can be thrust onto you earlier than you wanted. It’s something we both still talk and think about. I guess ultimately it will impact on our future choices. (Sorry for the over share!)

What I’m trying to say is, chronic illness puts serious strains on relationships, and I’m sure there is married sufferers out there that can tell this story far better than me. I just wanted to address the young people out there who might feel that their relationships are going to be difficult. They will be, but everyone’s are! Look after yourself and I promise you won’t end up like some sort of Bridget Jones figure, unless that’s what you want, then cool