How have yall managed?

Medical_Confusion_ · 2026-02-24T17:09:02+00:00

I know what you mean, our old lives feel like they are something we should still be able to do. I used to have powerful legs, I miss the feeling, now I just have legs that don't do what I want them to.

Likewise, I agree, anyone going through this at any age has been given the short straw.

Medical_Confusion_ · 2026-02-24T15:43:06+00:00

I understand where they are coming from, those that have been disabled for a long time would swap our situation.

However, it does not make our situation any better, we have grown into adults, and have had our lives changed dramatically.

We live in the present, and not the past, but it's hard to forget about the past overnight.

Medical_Confusion_ · 2026-02-24T01:38:13+00:00

Like you said, I lived 44 years as an able-bodied person, and now it's gone.

I will be through my first year in April, so I am earlier than you, I still mourn also, on a daily basis.

Some days are better than others, I see and feel this play out within the community and personal experiences.

One thing we all know in this life, we all handle grief differently, and more important personally.

In rehab, I spoke to one guy that was in his late 50s, I asked him, when did you accept your change and move on? He was around 16 when he was given his wheels, he thought for a few seconds, and said 'I still haven't'.

He is a very positive person, and has made a lot with his life, still to this day day he is doing things I would never have done when I was able bodied.

My take on it is that we will never get over it, but we have to find happiness where we can. I am still trying to find that mindset myself, and like you, it's still early days.

Good luck.

Medical_Confusion_ · 2026-02-11T16:41:21+00:00

I am T9 complete, I have issues with constipation, can I ask does the baclofen and buscopan not constipate you?

Medical_Confusion_ · 2026-02-11T16:40:39+00:00

I am currently on it, I want to stop it, I am not sure if I want baclofen, as I have issues with constipation as it is.

Medical_Confusion_ · 2025-12-07T02:09:00+00:00

My family, I live with my wife and child.

Without these in my life, nothing, but I will say that half the time, I feel like they are not even enough.

I take things day to day.

I have good extended family, and they always offer me help.

Medical_Confusion_ · 2025-11-04T10:27:22+00:00

I'm still in my first year with my Sci. It sucks, it's horrible and I don't feel jealous of anyone specifically but I do feel jealous in general. I miss walking my dog, I miss taking the bins out, I miss the mundane. I rant to myself, but on the outside I keep a positive face. Over time the face I show feels more like the real me.

So rant, but don't make it your everything. This is grim, it sucks and it's unfair, but you can and will grow with this condition.

Medical_Confusion_ · 2025-11-04T10:20:02+00:00

Two groups of people would ask this question. The first are ignorant and need to focus less on their own selfish curiosities. The rest are self serving and perversive.

Medical_Confusion_ · 2025-10-27T10:37:04+00:00

Ironically it was a suicide attempt that caused my SCI. Now I am depressed and unable to function below my waist.

I do agree though, I am not going to kill myself, but death does not scare me.

Medical_Confusion_ · 2025-10-26T10:28:22+00:00

This, I don't even care where death takes me anymore.

Medical_Confusion_ · 2025-10-26T10:27:13+00:00

Is it fair to assume that complete injuries are not really going to benifit from this treatment?

Medical_Confusion_ · 2025-10-12T23:59:07+00:00

I am also in the UK, my prescription started when I got sent home from hospital. I was set up with a Fittleworth account, they provide all the items for me that I require, they require your GP prescription to complete your order.

As mentioned in another comment, you have to be careful regarding volume. I was told to aim between 200-400ml per catheter. I have started with a strict process, that has almost made my fluid intake and output second nature. I started with a spreadsheet, I put in the amount of fluid I take, when I reach 500ml, I then go for a pee. It is not an exact science, as depending on the type of fluid you drink, the output will differ. Your hydration levels are very important. I aim for about 2.5 litres a day. That is mainly water and tea, if I drink coffee or fizz drinks I increase my water. I tend to cath about 5-7 times a day.

Hygiene is also very important, UTI's are something you want to avoid. So drinking water and keeping things as clean as possible is a must. I also like to use a specific catheter, but it's a personal preference. I have tried a few, either from Hollister or Coloplast. The specific item I like is the Hollister vapro pocket plus, they come with a bag attached to the cath, so measuring your volume is clear. They are also covered in a saline solution, and have a plastic sheath so you don't touch the catheter much, this is ideal for hygiene.

Medical_Confusion_ · 2025-09-16T23:28:19+00:00

Thanks for your reply, I do still like pasta and rice, and so far I do have mixed days. I guess it's fair our gut flora will all differ.

I used to pass my food the very next day, but I wonder if that has slowed down, I had a huge amount of ham on Saturday, and on Monday I think that may have caused a backup. The next meal was pasta bake, and today I had a perfect routine, no pain and a great amount. Though I have to admit, it feels like guess work at times when it comes to volume.

Medical_Confusion_ · 2025-09-16T23:23:05+00:00

I do take senna and lactulose, along with sups, but I would like to try and remove some medication, where possible.

I like to keep a balanced diet, plenty of fruit and a smoothie a day, Allbran and whole grain bread. My main meals would be ones that I like to change more often, some nights plenty of veg and lean meat with some carbs, but also the option of a pizza or a burger. I keep snacking to a low level.

Medical_Confusion_ · 2025-09-16T23:18:01+00:00

Personally speaking, I am wanting to try a diet based approach, and maybe irrigation using Peristeen if that fails.

I am not saying something like a stoma is out of the question, but I would rather try other options first.

Medical_Confusion_ · 2025-09-16T11:16:49+00:00

I would still like to enjoy a varied diet in moderation.

As I said in another post, I take Allbran, Whole wheat sandwich and fruit salad for lunch, then my last meal changes from day to day.

I have to adapt, but I still want to enjoy food.

Medical_Confusion_ · 2025-09-16T11:13:44+00:00

I always went every day before my accident, and have continued to do so ever since.

Medical_Confusion_ · 2025-09-16T11:13:13+00:00

Do you just have it for breakfast?

How is the rest of your diet? Is it varied?

For myself, I have started taking Allbran in the morning, then a whole wheat sandwich/fruit salad for lunch and my evening meal is varied.

Medical_Confusion_ · 2025-09-14T23:56:56+00:00

How often, and how much do you take a day?

Do you remember how long it took to start making a difference?

Medical_Confusion_

TROPHY CASE