Autoimmune disease

[AngelM]

Has anyone done the walk with systemic autoimmune diseases? Did you flare?

I am wanting to do my first walk in 2016 and the only thing that keeps me from hopping on a plane and going now (ok maybe waiting and hopping a plane in May of THIS year) is my fear about my body not holding up to the walk.

I have Ankylosing Spondylitis, Sjogrens, and SLE with Antiphospholipid Syndrome.

I have fusion of the SI joints in my pelvis, some of the joints in my spine, and bad deterioration of my hips, knees. When I flare I get costsochondritis. I have chronic sinus/throat/respiratory issues from the Sjogrens.

I am in pain every day, and often need a cane or a walker because I fall. I need a lot of medicine.

However, I can get those trekking poles, I can go slowly, I can bring my medicine, I can at least try and see what happens right?


What have been your experiences?

 

[malingerer]

Be brave! You have already answered your own question! I am 76 and was last going over the Pyrenees in sep 14 for the fourth time! I am falling to bits with Menieres as well so I fall but i got the pacer poles. have a lung condition so i cough and spit big time! i have a high tone hearing loss plus tinnitus and need to be two feet from the tv in order to read the text! ye gods, sez me, I shouldnt be allowed out! develop your own pace, walk slowly and take many rests. do not set impossible daily stages and develop a great afinity with the tops of ya boots cos you will be looking at them for a long time! be kind to yourself and have some treats because it is YOUR camino! God speed, love and luck!

the malingerer!

 

[SYates]

... However, I can get those trekking poles, I can go slowly, I can bring my medicine, I can at least try and see what happens right?...

Speak to your doctor, and if s/he gives his/her ok, follow your own advice above. Buen Camino! SY

 

[Deleted member 3000]

You can find a lot of motivational support on the Forum, but I suggest that you get your medical advice from your physician. Buen camino!

 

[Anemone del Camino]

I have Ankylosing Spondylitis, Sjogrens, and SLE with Antiphospholipid Syndrome.

AngelM, look at the posts from this holiday season. Someone who has Sjorgrens posted under the title "Walking with Celiac" or something similar. That will get you started.

Good luck.

 

[bystander]

I am suffering from, am being treated for, an auto-immune disease, Bullous pemphigoid, for which I was hospitalised for most of October.

Whether or not I will be able to start on the camino, as I hope, in the early summer will be down to what my consultant advises me closer to that planned date.

In the meantime all I can do is continue to prepare regardless.

 

[normandog]

Hello Angel, this just hit home to me, as life with autoimmune is challenging, but does not need to become our only focus. I also have multiple autoimmunes, including sjogrens, but in addition to that, that I am an active adventurous lady who enjoys a good challenge. I have never travelled before, yet this last July headed off to Paris on my own, and then the camino, starting at SJPP in July. My plan was to cycle the camino, hoping that the joint jarring would be less painful. I had the most wonderful eight days of my life until my body flared up in every way. I was sad to stop my journey, but soon discovered that this was part of my journey. I sought treatment at the hospital, and then rested and did a "real slow" camino on the bus. There were plenty of other people on the bus with various ailments...and the camino made room for all of us. EVERYONE is just out there doing what they can! I know that some would say that this is not a "real" pilgrimage, but my experience was real. I was blessed to meet wonderful people, to eat crazy good food, to walk through churches and historic sites that just touched my soul. I still lurk on this forum to listen for that feeling from fellow pilgrims, to relive a bit of the heaven that I found on the camino.
When I sought medical treatment, the doctors were well informed about the conditions, we conversed using google translate, I never had a moments doubt or fear with the treatment. As I set out on my journey I also thought... what if other people notice my limitations, or what if I get sick. It is a gamble, but so is not going.. what if you miss an amazing experience? Plan to be sick... find out where hospitals are, have a plan b in your back pocket... I got to spend three glorious days at a monastery in Sarria sleeping, eating and resting. One night, another lady actually tucked me into bed! When was the last time that you had that experience. I will treasure it forever!
With my face fully inflamed... see below... I danced in front of the cathedral at night with all of the other pilgrims... hands in the air, not thinking about what my face looked like. Then I noticed the streetcleaner staring at me... and he said I was beautiful! He rose to the challenge of looking further than my face... and you have the challenge of looking further than your ailments. They are a part of you, but not the entirety of you. They will limit how you do things, but you will choose what things to do. You are required to check with your doctor... to ensure that you have your plans ready... and then you will decide what part of this journey will be yours! Buen Camino. I look forward to future posts from you dancing in the square at santiago! And I will dance here in my house thinking of you..

 

[malingerer]

what a wonderful thread this is becoming and i would like to thank angel eyes for starting it! i hereby nominate her as leader of this wild band! as to the how of camino some years ago after having reached Merida coming from Malaga I was sick tired and fed up and went to santiago by train! I felt it was the most weird camino i had so far encountered! who cares how ya get there, its the journey after all and who sees the mountains we climb inside ourselves or the tears that burn in silence when we have no candles left to light! keep on truckin!

peace, love and luck to all and say one for Charlie.

the malingerer

 

[AngelM]

Thank you everyone! I am so glad go know that so many of you have done this! I will not be afraid!

I don't mind if I need to have a rest, or use a bus or a cab, or whatever. I need to find these poles for sure. This will take extra planning for sure, but I think I can do this. My rheumatologist already told me she supports me going camping and hiking as long as I'm careful and gentle on myself. So, surely this is the same - just a little BIGGER lol!

I will talk to her. I will get myself a physical therapist too to help me figure out some good exercises to prepare too.

Thank you all.

 

[AngelM]

So were you guys on immune suppressing drugs at the time of your Camino? Did you stay in albergues? Did you have any trouble with sickness or infection?

I'm wondering if I should plan on staying I private rooms, or if I will be ok? I can't stop the immune suppressants because before them I couldn't walk hardly at all and now I only need a cane sometimes. So these meds make this trip possible!

 

[normandog]

I stayed in alburgues. I was careful about washing dishes in the alburgues before using them. And really careful about hand hygiene.

I did get that wild "all head infection" I feel that it started in my mouth, and carried on to my neck, eyes, ears and face. I did eat some meat that maybe wasnt cooked enough... but cooked well enough that I did not send it back. I also did drink from the public fountains... and in hindsight... I would not next time. I am sure that the water is good, but I wonder about them being out in the open, with a lot of airborne bacteria. For most pilgrims, this would be ok.... and for most of the time for people with auto immune they would be fine. but add in the extra excitement stress and fatigue that our bodies are dealing with, and any small bug can bring us to our knees.
I also did do physio three times a week pre camino to get things working to optimum.

Just get your plan b in your back pocket... and get travelling! Find out where bus stations are all along the camino so that you have an out at any time.
The monastery that I stayed in while I was sick was prepared to let me stay as long as I needed. They gave me a separate bed area...but because of the language difference... I was not sure if it was for my comfort... or to keep the other pilgrims safe from infection.

EVERYONE brings challenges to the camino... some physical, some emotional, ... and there is a way for everyone... YOU TOO!
You are brave to consider this ... and that is what makes life so exciting... glass half full or half empty... its ours to choose...
Buen Camino

 

[susanawee]

Hello Angel, this just hit home to me, as life with autoimmune is challenging, but does not need to become our only focus. I also have multiple autoimmunes, including sjogrens, but in addition to that, that I am an active adventurous lady who enjoys a good challenge. I have never travelled before, yet this last July headed off to Paris on my own, and then the camino, starting at SJPP in July. My plan was to cycle the camino, hoping that the joint jarring would be less painful. I had the most wonderful eight days of my life until my body flared up in every way. I was sad to stop my journey, but soon discovered that this was part of my journey. I sought treatment at the hospital, and then rested and did a "real slow" camino on the bus. There were plenty of other people on the bus with various ailments...and the camino made room for all of us. EVERYONE is just out there doing what they can! I know that some would say that this is not a "real" pilgrimage, but my experience was real. I was blessed to meet wonderful people, to eat crazy good food, to walk through churches and historic sites that just touched my soul. I still lurk on this forum to listen for that feeling from fellow pilgrims, to relive a bit of the heaven that I found on the camino.
When I sought medical treatment, the doctors were well informed about the conditions, we conversed using google translate, I never had a moments doubt or fear with the treatment. As I set out on my journey I also thought... what if other people notice my limitations, or what if I get sick. It is a gamble, but so is not going.. what if you miss an amazing experience? Plan to be sick... find out where hospitals are, have a plan b in your back pocket... I got to spend three glorious days at a monastery in Sarria sleeping, eating and resting. One night, another lady actually tucked me into bed! When was the last time that you had that experience. I will treasure it forever!
With my face fully inflamed... see below... I danced in front of the cathedral at night with all of the other pilgrims... hands in the air, not thinking about what my face looked like. Then I noticed the streetcleaner staring at me... and he said I was beautiful! He rose to the challenge of looking further than my face... and you have the challenge of looking further than your ailments. They are a part of you, but not the entirety of you. They will limit how you do things, but you will choose what things to do. You are required to check with your doctor... to ensure that you have your plans ready... and then you will decide what part of this journey will be yours! Buen Camino. I look forward to future posts from you dancing in the square at santiago! And I will dance here in my house thinking of you..

Such a lovely, lovely, positive and affirming response....Camino Hugs.

 

[Rebekah Scott]

What lovely, brave people you all are.
I am very allergic/asthmatic with unknown triggers. Not so severe as you all, but scary enough. I have done multiple caminos, and I live along the Frances. Please consider my house a refuge if you have a flare-up. I am not a medical professional, but I have a clean, private room where you can rest and recover, about half way -- give me a call or note, and get the bus or train to Sahagun.
I believe in what you are doing. God gave you the call. The courage is up to you!

 

[AngelM]

With my face fully inflamed... see below... I danced in front of the cathedral at night with all of the other pilgrims... hands in the air, not thinking about what my face looked like.

I just want to say thank you again to all of you, and especially normandog for sharing this lovely story. You've really inspired me and made me feel like I can do this. When my husband asked me (again) "so you really think you could do this?" I replied "I don't think I can, I am telling you that I am going to do it. As soon as the doctors tell me I can go I am going." He thinks I am insane, but he always supports me, he will come around. He's just afraid. It's been a terrible year, healthwise. I am sure that in another year things will be better, and I will do what I can and what I can't do I won't.

Thank you.

 

[AngelM]

What lovely, brave people you all are.
I am very allergic/asthmatic with unknown triggers. Not so severe as you all, but scary enough. I have done multiple caminos, and I live along the Frances. Please consider my house a refuge if you have a flare-up. I am not a medical professional, but I have a clean, private room where you can rest and recover, about half way -- give me a call or note, and get the bus or train to Sahagun.
I believe in what you are doing. God gave you the call. The courage is up to you!

What a beautiful offer, and thank you for the encouragement.

 

[normandog]

What a beautiful offer, and thank you for the encouragement.

I just want to say thank you again to all of you, and especially normandog for sharing this lovely story. You've really inspired me and made me feel like I can do this. When my husband asked me (again) "so you really think you could do this?" I replied "I don't think I can, I am telling you that I am going to do it. As soon as the doctors tell me I can go I am going." He thinks I am insane, but he always supports me, he will come around. He's just afraid. It's been a terrible year, healthwise. I am sure that in another year things will be better, and I will do what I can and what I can't do I won't.

Thank you.

Thank you for starting the thread and allowing people to consider what limitations they have to live with and what limitations can be negotiated...honestly it is very affirming to revisit limitations that I place on myself that I may not need to when I speak to others about possibility. So thank you for the conversation.
What about inviting your husband to join you... going at your own paces but meeting up for overnights or dinners or whatever... show him what you've got.
I am very much planning on continuing to lurk here... and hope in the next couple of years to see your dancing face on a post!!

 

[Anemone del Camino]

Just get your plan b in your back pocket... and get travelling! Find out where bus stations are all along the camino so that you have an out at any time.

AngelM, Normandog suggests figuring out where there are buses. The Rother guides are the best at this: they show you bus and train station in relation to the Camino and albergues. This could be money well spent for you. And aren't you lucky, the have an English version of the CF: https://www.rother.de/titpage/4835.php. Latest edition is 2013 - you can also scribble in it the new albergues you will discover on the Eroski site or the Mundicamino.

El Camino frances is perfect because other than in only a few areas it has albergues every 5 or 10km. I would suggest you do NOT start in SJPP, as beautiful as that day is, as it is hard. And perhaps too hard, especially at the start of the Camino, for someone who needs to look after herself like you do. Same for the hike up O'Cebreiro. Those are hard enough for those of us with healthy joints.

Also, keep in mind that you can get a taxi to come pick you up just about anywhere if you need. May be costly, and take a bit of time for them to get to you, but most bars have phone numbers tucked away.

Finally, you asked about hygene in Albergues. I don't like using those dishes and utensils, and I do not have an autoimmune condition. I think they just get a quick rinse from most pilgrims. If you want to increase your chances of landing is a cleaner albergue than most, and mind you, most are just fine, you may want to look up the ones that are part of the Red (network) of albergues and read reviews in Eroski and Mundicamino etc. I don't think you will get much cleaner places in pensiones than in the best rated albergues.

No matter what your experience is, you will never regret what ever it is you are able to accomplish on the Camino. What you would regret is never having experienced it and wondering if you would have walked it. We all have our limitations. To tell you the truth, for me, it more the mental than the physical (are we there yet?, where's the shortcut, is there a bus I can take, surely I can't take another step), and I am not exactly tiny, so I know my body must be challenged. But it's the mind that gets me. So go, do it, take all the precautions you need to take, have your bag carried, have little cards explaining in Spanish what your medical condition is and it may require and walk what ever it is you can walk, reserve in Albergues so you don't race for a bed. Do what you need to be good to yourself and enjoy.

 

[AngelM]

What about inviting your husband to join you... going at your own paces but meeting up for overnights or dinners or whatever... show him what you've got.
I am very much planning on continuing to lurk here... and hope in the next couple of years to see your dancing face on a post!!

I would love it if he did join me! He would really enjoy this too I think, but I'm not sure of we can make it happen, and he hasn't expressed any interest at all in going. I think it's really odd, because he likes to go hiking and stuff, but this seems to not be grabbing him like it is me.

We also have a little boy. He's three now, but if all goes according to my wishes he will be 4 and a half when I start my Camino. I think if we could do it with my son maybe we'd do it as a family. Wouldn't that be an awesome thing? Maybe they could join me for the last couple of days or something.

We will just have to see what happens. This weekend they are going out of town to visit my in laws and I will be alone resting. My first "weekend off" in over three years, lol. I'm excited and plan to take a good long walk and see how I do.

 

[LesBrass]

Has anyone done the walk with systemic autoimmune diseases? ... What have been your experiences?

Hello Angel... what a lot of wonderful replies you've had! I'm autoimmune but I have a different set of problems to you. I also take drugs to supress cancer and suffered a bit because I dont have parathyroids and I think the additional walking/sweating/heat had an impact on my calcium and mineral levels.

I took a copy of my prescription with me... I also made a .pdf version and stored it on my phone and I kept the packet labels from my medicine in case I needed some. I kept all this with my passport. I bought a small thermal bag which kept my drugs cool and dry http://www.medpac.co.uk/index.php?route=product/product&product_id=58 I think it's meant for diabetics but it worked a treat for me.

I had great help from 2 pharmacy along the way... one spoke english, one spoke french which was great for me. I also saw one doctor and he used a translation programme on his computer to give me some advice... but it was always easy and simple and never a problem.

I really didnt have any problems with ill-health or picking up bugs but I was really careful about hand-washing and taking precautions. My husband was really worried before I left but I was totally fine. I had a blood test when I got home and my drugs were a little out of sync but nothing that caused any problems.

I'm going again in April and have no concerns... hope this helps ease a afew worries

 

[AngelM]

Thank you Anenome for this great advice!

 

[AngelM]

I'm going again in April and have no concerns... hope this helps ease a afew worries

It does help! Thank you!

I am really encouraged by all these replies.

 

[Janet King]

Angel, I could have written your post...I have a lupus diagnosis also with a strong hint of RA. I am currently on methotrexate, orensia and sulfazalizine and I wonder the same thing about being immunosupressed and doing the camino. I will probably stay in private hostels or hotels to lower my exposure.
But my bigger concern is the sun!
You know, sun is our enemy and it can kill us. So, I have been checking into the full UV clothing and head wrap with a sun umbrella. And I plan to take 8- 10 days to walk the last 100km from sarria that most people seem to do in six. I also realize I may have to walk early before too much daylight and stop between 10 and 2 when the sun is the worst for us.
I need to lose some weight and increase my fitness--as they, say the camino starts with our preparation. I will delay if I am in atype of flare... And I'll be taking some prednisone with me-- just about every trip to Europe means a dose pack for me--I think just the flight, long hours, and stress/excitement causes a flare for me so I can imagine what walking will do!

M daughter had the same reaction as your husband ...I am traveling with a friend that will have very specific instructions about watching for a flare, malar flush, or brain fog--because, as you know, we don't always make good decisions when we are flared since judgement can't be affected.

My thoughts so far! Let's stay in touch!

 

[AngelM]

Hi Janet! The sun! You know at home I am diligent about the sun but I really don't know how to handle it on for something like this. I was planning on sunscreen and hats - the clothing idea is fabulous! I need to look that up! As for stopping mid-day, it sounds like there are a lot of places to stop - I may just plan on long lunch breaks and small dinners.

I'm hoping my Rheumy will give me a whole months worth of Prednisone and then step me down from it when I get home, so that I'm not weaning off of it as I'm walking. I almost always get an infection as I step off a prednisone pack.

When will you be going?

 

[Jeb]

I also have Lupus....plus RA, Sjøgrens, Raynauds, Shrinking Lung Syndrome and a few more smaller things. I am planning to do the whole CF in Sept 2016. I travel a lot. My last major flare was in 2005 and I lived in the hospital for 1.5 years on chemotherapy. Not metathrexate as that did not work for me but full chemo. It took me a couple years to recover but since 2007 I retired and have been travelling ever since. The key is to be sensible and know your limits. Know what your triggers are. I have managed successful trips (Svalbard, Alaska, Iceland, Portugal, Africa, all over US, and more) since. I go somewhere about every other month or so (leaving for Italy tomorrow!). I say go for it....just go prepared and go in your own way for what works best for you. Also, yes, I do take meds. I am off Prednisone (by my own request) but do travel with a bottle of high dose Prednisone pills for emergency. My only med now is Imurel and prescription Vit D.

I would say, however, don't go while you are flaring! Wait until the flare settles. As you know, flaring isn't fun so it would not only put you at risk but also not be a fun trip either.

When in 2016 are you planning on walking? Which route? Perhaps we will run into each other!

 

[Anniesantiago]

I have Multiple Chemical Sensitivities, an overactive immune disease.
I find I feel 100% better at the end of each Camino, as the regular 6 hour walking in nature helps to chelate chemicals and to calm my immune system.
I suspect you will feel better, not worse, after your Camino.
You may have some rough days, but go slow and listen to your own body.
If it calls for a 2 hour walking day, just do it ::shrug:: and don't push yourself.
There are no rules

Buen Camino!