Yala i sɛgɛnnen don hali ni i sunɔgɔra ka ɲɛ wa? Yala o bɛ se ka kɛ sɛgɛn basigilen ye (ME/CFS) wa?

Yala i bɛ kunun tuma dɔw la sɔgɔma, k’a ye ko fanga tɛ i la wa? Hali ni i bɛ sunɔgɔ ka ɲɛ lɛrɛ caman kɔnɔ su fɛ, yala i bɛ sɛgɛn hali bi i n’a fɔ i ye baara caman kɛ tile bɛɛ kɔnɔ wa? Ni aw y’a ye ko aw farikolo bɛɛ bɛ dimi ani ni aw tɛ se ka aw hakili to baara la hali ni aw ye baara fitinin dɔ kɛ, i n’a fɔ ka so saniya walima ka taa magasa la, o tuma na, aw ka kan ka nin barokun kalan. N’a sɔrɔ i tɛ sɛgɛn dɔrɔn. Bi an bɛ kuma cogoya dɔ kan, mɔgɔ caman tɛ min dɔn, nka min bɛ nɔba bila u ka ɲɛnamaya la.

N’an y’a fɔ cogo nɔgɔman na, sɛgɛn basigilen (ME/CFS) ye mun ye?

Hali ni tɔgɔ jan `(Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)` ka gɛlɛn dɔɔni, an b’a wele ko Chronic Fatigue Syndrome `(Chronic Fatigue Syndrome)` walima `(ME/CFS)` ni a surunyalen don. N’an y’a fɔ cogo nɔgɔman na, bana basigilen don, o kɔrɔ ye ko a bɛ mɛn sen na. A taamasiɲɛ kunba ni a jugumanba ye sɛgɛn ye min tɛ deli ka kɛ, sɛgɛn jugumanba.

Miiri k’a filɛ, nin tɛ sɛgɛn dɔrɔn ye an bɛ min sɔrɔ wula fɛ tile bɛɛ baara kɔfɛ. O ka dun kosɛbɛ ka tɛmɛ o kan. O sɛgɛn tɛ ban hali ni an ye lafiɲɛbɔ kɛ cogo o cogo, walima ni an ye sunɔgɔ kɛ cogo o cogo. A bɛ i n’a fɔ i ka telefɔni bɛ charge 100%, nka a bɛ jigin ka se 10% ma miniti tan kɔnɔ. An mana lafiɲɛ cogo o cogo, o sɛgɛn tɛ ban.

Nin bana in fɛn wɛrɛ min ɲɔgɔn tɛ, o ye ko a bɛ juguya farikolo walima hakili ta fan fɛ sɛgɛn dɔɔni kɔfɛ. An b’o wele ko `sɔgɔsɔgɔninjɛ kɔfɛ`. O kɔrɔ ye ko hali ni aw ye baara dɔɔni kɛ, a bɛ se ka gɛlɛya aw ma ka wuli ka bɔ aw ka dilan kan tile caman o kɔfɛ. O b’a to a ka gɛlɛn mɔgɔ dɔw ma k’u ka don o don baaraw kɛ, ka taa baara la, walima hali ka taa lakɔli la.

Nin bana in taamasiɲɛ kunbabaw ye jumɛnw ye?

ME/CFS taamasiɲɛw bɛ se ka ɲɔgɔn ta kosɛbɛ mɔgɔ ni mɔgɔ cɛ. A taamasiɲɛw juguya fana bɛ se ka ɲɔgɔn ta don o don. Don dɔw la, aw bɛ se ka kɛnɛya dɔɔni, nka o dugujɛ, aw tɛ se ka wuli ka bɔ aw ka dilan kan. An ka a taamasiɲɛ kunbabaw lajɛ.

Mun na nin ɲɔgɔn bɛ kɛ? O kunw ye mun ye?

Tiɲɛ na, dɔgɔtɔrɔw t’a dɔn hali bi tigitigi ME/CFS sababu ye min ye. A bɛ fɔ sisan ko a tɛ sɔrɔ sababu kelen fɛ, nka a bɛ sɔrɔ fɛn dɔw faralen ɲɔgɔn kan. Sɛgɛsɛgɛliw ye fɛn minnu Sɔrɔ, olu dɔw filɛ nin ye:

• Yɛlɛma minnu bɛ kɛ farikolo tangalanw na: Banakisɛfagalanw, minnu bɛ an farikolo tanga banaw ma, olu bɛ se ka taa bin dɔɔni tuma dɔw la. I n’a fɔ a bɛ kɛ cogo min na farikolo tangacogo dɔw la, farikolo tangalanw bɛ se ka fili ka bin an yɛrɛ ka farikolokisɛ ɲumanw kan.
• Gɛlɛya minnu bɛ fanga sɔrɔli la: Kɔnɔnatumuw ye fɛn fitininw ye minnu bɛ an farikolo la. An bɛ dumuni min dun, o farikolokisɛw tɛ se k’o fɛn caman tigɛli kɛ fanga ye ka ɲɛ. O de kosɔn, fanga tɛ an kunkolo ni an farikolo yɔrɔw la ka baara kɛ.
• Fɛn minnu bɛ sɔrɔ jamu fɛ: Nin bana in ka teli ka kɛ denbayaw kɔnɔ. A bɛ miiri ko jamu yɔrɔ dɔ b’a la, nka jamu kɛrɛnkɛrɛnnen si ma sɔrɔ.

I n'a fo:

• Banakisɛfagalanw : O bɛ se ka daminɛ banakisɛfagalanw kɔfɛ i n’a fɔ Epstein-Barr banakisɛ (banakisɛ min bɛ kɔnɔboli bila mɔgɔ la) ani Ross River banakisɛ. Kɔsa in na, a jirala ko COVID-19 bɛ mɔgɔ minnu na, olu fana bɛ nin sɛgɛn kuntaalajan suguya in sɔrɔ.
• Hakilila walima farikolo degun jugumanba : Nin taamasiɲɛ ninnu bɛ se ka kɛ fana ko dɔ kɔfɛ i n’a fɔ opereliba, kasaara, walima mɔgɔ kanulen dɔ ka saya.

Dɔgɔtɔrɔ bɛ o bana sɛgɛsɛgɛ cogo di?

Ni nin taamasiɲɛ ninnu bɛ aw la, aw ka kan ka min kɛ fɔlɔ, o ye ka taa dɔgɔtɔrɔso la. Nka aw hakili to a la ko joli sɛgɛsɛgɛli walima sɛgɛsɛgɛli kelen tɛ yen min bɛ se ka ME/CFS sɛgɛsɛgɛ.

O la, dɔgɔtɔrɔ bɛna a lajɛ ni bana wɛrɛw tɛ yen. Bana wɛrɛw bɛ yen minnu bɛ se ka nin taamasiɲɛ suguw bila mɔgɔ la. Misali la, sɔgɔsɔgɔninjɛ gɛlɛyaw, sukarodunbana, jolidɛsɛ, a ɲɔgɔnnaw O la, dɔgɔtɔrɔ bɛna a ɲini aw fɛ aw ka joli sɛgɛsɛgɛli kɛ, ka sugunɛ sɛgɛsɛgɛli kɛ, a ɲɔgɔnnaw.

O bɛɛ kɛlen kɔfɛ, ani a jirala ko bana wɛrɛw tɛ yen, wa i ka bana taamasiɲɛw bɛ bɛn `ME/CFS` ta ma, o tuma na, nin sɛgɛsɛgɛli in bɛ kɛ. Nin hakilina ninnu de bɛ lajɛ kosɛbɛ:

• Yala sɛgɛn jugumanba bɛ aw la min bɛ tɛmɛ kalo 6 kan, wa a tɛ lafiya ni lafiɲɛbɔ ye wa?
• Yala i farikolo bɛ a ye ko ɲɛnamaya tɛ a la hali sunɔgɔ kɔfɛ wa?
• Yala bana taamasiɲɛw bɛ juguya farikoloɲɛnajɛ kɔfɛ wa?
• Yala ``orthostatic intolerance'' taamasiɲɛw bɛ aw la i n'a fɔ kunsɛmɛnasumaya walima dimi ni aw jɔlen don wa?

A bɛ se ka waati dɔɔni ta walasa ka bana sɛgɛsɛgɛli sɔrɔ. Aw ka kan ka sɛgɛsɛgɛli caman kɛ. A bɛ se ka kɛ fɛn ye min bɛ i degun, bawo i bɛ ko gɛlɛn dɔ la kaban. Nka ka sɛgɛsɛgɛli kɛ, o ye fɛɛrɛ fɔlɔ ye min nafa ka bon kosɛbɛ walasa ka furakɛli ɲuman sɔrɔ i ye.

A furakɛcogo bɛ kɛ cogo di? Cogo di an bɛ se ka ɲɛnamaya nɔgɔya?

Tiɲɛ don ko fura ma sɔrɔ nin ko in na fɔlɔ. Nka o t’a jira ko dɛmɛ si tɛ i bolo. Fɛɛrɛ caman bɛ yen walasa ka aw ka bana taamasiɲɛw kunbɛn ani ka ɲɛnamaya nɔgɔya kosɛbɛ. Furakɛli bolodacogo tɛ kelen ye mɔgɔ kelen-kelen bɛɛ la. Aw ka dɔgɔtɔrɔ bɛna minnu sugandi minnu ka fisa aw ma.

Fɛn minnu ka kan ka sinsin kosɛbɛ olu ye:

• Pacing Activities: O de ye fɛn ye min nafa ka bon kosɛbɛ. N'an y'a Fɔ cogo nɔgɔman na, k'i ka "kuran dan" faamuya ani ka baara Kɛ o dan kɔnɔ. Lafiɲɛbɔ kɛli sani i "ka ji bɔ pewu." Misali la, sanni i ka so saniya tile bɛɛ kɔnɔ, i ka so kelen dɔrɔn saniya ani ka lafiɲɛ caman sɔrɔ. Aw ka dɔgɔtɔrɔ bɛna aw dɛmɛ ka nin ko in ɲɛnabɔ ka ɲɛ.
• Sunɔgɔcogo caman cili: Ni i delila ka taa i da waati kelen na don o don, ka wuli waati kelen na, ka i yɛrɛ tanga sunɔgɔ janw ma tile kɔnɔ, ani ka telewisɔn ni telefɔni filɛli dabila sani i ka sunɔgɔ, o bɛ se ka i ka sunɔgɔcogo ɲɛ.
• Fura : Hali ni fura kɛrɛnkɛrɛnnen tɛ ME/CFS la, a taamasiɲɛ minnu bɛ sɔrɔ a la, olu bɛ se ka furakɛ. Misali la, dɔgɔtɔrɔ bɛ se ka dimimadafura di dimi ma, sunɔgɔfura minnu bɛ sunɔgɔ gɛlɛyaw la, ani degun furaw.
• Hakilila kɛnɛya dɛmɛni: Ka ɲɛnamaya kɛ ni bana basigilen ye i n’a fɔ nin, o bɛ se ka kɛ hakili gɛlɛya ye. O la, walasa k’aw dɛmɛ ka aw yɛrɛ dege nin ɲɛnamaya kɛcogo kura in na, aw ka dɔgɔtɔrɔ bɛ se ka aw bila hakiliɲagami furakɛli la, kɛrɛnkɛrɛnnenya la, hakiliɲagami furakɛli (CBT). O b’aw dɛmɛ ka bana in degunw kunbɛn.

Ɲɛnamaya bɛna taa ɲɛ cogo di ni nin ko in ye?

ME/CFS tɛ kelen ye bɛɛ fɛ. Mɔgɔ dɔw fɛ, a taamasiɲɛw bɛ se ka ɲɛ dɔɔni dɔɔni waati tɛmɛnen kɔfɛ. Nka dɔw ta la, a taamasiɲɛw bɛ se ka to sen na waati jan kɔnɔ. A man teli mɔgɔw ka kɛnɛya pewu bana in na.

Hakilina tɛ kelen ye, n’o ye ko nin bana in bɛ mɔgɔ si hakɛ surunya. Mɔgɔ dɔw bɛ ɲɛnamaya kɛ cogo bɛnnen na. Nka, ɲininiw y’a jira ko mɔgɔ dɔw bɛ farati la ka u yɛrɛ faga k’a sababu kɛ degun ni fɛn caman Changements dans la vie ye min bɛ na ni o ye. O la, ka i janto i hakili kɛnɛya la, o nafa ka bon kosɛbɛ. Ni aw bɛ a ye ko aw degunna, ni aw bɛ aw kelen na, walima ni aw sɛgɛnnen don ɲɛnamaya la, aw bɛ kuma aw ka dɔgɔtɔrɔ fɛ walima aw dalen bɛ mɔgɔ dɔ fɛ o ko la.